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    • #26689
      Colleen Steele
      Keymaster

      Forum member, @sandydenn, has an upcoming appointment with a rheumatologist to determine if she has an unmanaged autoimmune disease that caused her PH.

      Do you have an autoimmune disease such as lupus or rheumatoid arthritis? Where you told that it caused your PH? How is your autoimmune disease being treated with your PH? Has treating the autoimmune issue helped to better manage your PH?

      Please share your personal experience with us.

    • #26699
      Jen Cueva
      Keymaster

      I wish you the best at your appointment at @sandydenn. I have been told a few times that this may be a possibility. But, I have yet to fit in a Rheumy to my team. It is a bit full at the moment, lol.

      Once things start to calm a tad, my CRS kicks in, and I forget all about this.

      I do know several PH patients who deal with autoimmune disease, too. Once one is usually under control, it seems to help balance the other. That is what I have noticed as a friend of others dealing with both.

      Please do keep us posted.

      • #33977
        Katherine
        Participant

        I was diagnosed with Rheumatoid Arthritis in 2010.  Then, after 5 years, I developed PAH.  I am on two treatments (Methotrexate and Plaquenil) for my RA and on triple therapy for my PAH (Ambrisentan, Tadalafil and Clinical Trial).  I find that my RA is well managed now as whenever I have a flare it is controlled very quickly.  I think that this helps my PAH quite a lot as inflammation is very detrimental for PAH and RA.  It is important to keep on top of all the symptoms that RA poses in order to keep PAH under control.

        • #34036
          Sandy
          Participant

          Very kind and insightful comments. Yes, I love digging in the dirt and coaxing things to grow. My garden is waking up…azaleas blooming, clematis full of buds, knockout roses leafing up… I love all of it. And yes, it is wonderful to recognize that we are not alone in this struggle and that we don’t have to explain repeatedly to each other how it feels… because we each know.
          Be well everyone and keep laughing because Jen is right, that’s the best and cheapest medicine available to us.

    • #26703
      Dawn
      Participant

      @colleensteele, I was diagnosed with limited scleroderma (crest syndrome) shortly before my ph diagnosis. A doctor a friend suggested I see during my search for what was wrong (before being diagnosed with ph) did a lot of bloodwork and it was found then. I see a rheumatologist every six months. Luckily I don’t yet see too many symptoms, and my dr says to just contact them when/if I do and she’ll start treatment. Although my ph dr isn’t totally sure what caused my ph, he thinks it’s more from the undiagnosed/untreated for so long sleep apnea rather than the scleroderma. I also found out through all that bloodwork that I have hashimoto’s thyroid. I’ve been on/off thyroid medication since my teens, with not much of a difference noticed. They did scans when I found out about the hashimoto’s and found that my thyroid gland is almost totally gone. The medication I’m on seems to at least keep me at a steady ‘level’.


      @sandydenn
      , best of luck with your appointment.

    • #26706
      Jim Sparrow
      Participant

      In addition to PH, I have 3 other autoimmune diseases:

      1/ Type 1 diabetes (’64)
      2/ Multifocal motor neuropathy (’88)
      3/ Systemic lupus (’96)

    • #26709
      Colleen Steele
      Keymaster

      @dawnt and @jim-sparrow, I’m sorry that in addition to your PH you battle autoimmune disease. Thank you for sharing. If anything it might help @sandydenn feel less alone and perhaps if she has questions or concerns you might be able to help her. You are all great! Love how helpful our forum members are.

    • #26717
      Steve Stiffelman
      Participant

      Hello,

      I was diagnosed with Limited Scleroderma about 16 years ago. The disease is progressive and I experienced some additional issues related specifically associated with scleroderma. It all began with Raynauds syndrome. After 10 years My rheumatologist prescribed annual echocardiograms. After 3 years the Ecco indicated PAH. 15% of patients with my issues develop PAH. I should have played the lottery that week.
      I take celcept for Scleroderma. Not a fun medicine. Overall, both diseases continue to progress. I hope that you do well.

    • #26719
      Jen Cueva
      Keymaster

      Hi @dawnt, I am sorry to hear about your autoimmune disease, along with PH. I know that adding additional coexisting illnesses complicate matters. I am grateful to know that you do not have many symptoms. Keeping an eye on that and keeping those 6 months appointments are helpful, right?

      Hi @jim-sparrow, so sorry to hear of the addition of those 3 along with your PH. How are you doing managing them together? Do you have any tips for @sandydenn?

    • #26720
      Jen Cueva
      Keymaster

      Hey @steves, I am sorry to hear that you struggle with several autoimmune diseases along with PH. I can only imagine how difficult this is for you to manage them all. It sounds like your rheumy is staying on top of things for you.

      I love hat you keep your sense of humor through it all. I know my hubby often tells me, maybe we should play the lottery when so many different health conditions pop up

      When you mention, CellCept, what side effect is the most bothersome for you? Is it the gastro side effects? I had a friend with PF who complained most of the GI side effects.

    • #26727
      Roxanne Giustini
      Participant

      It seems like this might be more common than people think. I have poly glandular autoimmune disorder type 2 that includes Addison’s Disease, Hypothyroidism and Premature ovarian failure. I was diagnosed with those back in 2001 and my pulmonologist and I have discussed that this could have been a contributing factor for the PH. Definitely seems like an area for future research and study. It’s always difficult to struggle with multiple issues at one time and can be difficult to know what is causing symptoms or problems. It is a big help to make sure your different care teams are in coordination. Good luck with everything!

    • #26728
      Jim Sparrow
      Participant

      I have to agree with what Roxanne said ^^ above ^^ with respect to multiple chronic conditions:

      It is a big help to make sure your different care teams are in coordination

      Often it’s a juggling act trying to manage the meds and symptoms from multiple disorders, but I remind myself that I’m fortunate for the healthcare professionals and care I have in Canada, and there are always people who are far worse off than I am.

      Every day is a new opportunity, and I try to make the most of what I have 😊

    • #26739
      Colleen Steele
      Keymaster

      @steves my son had to take cellcept post-transplant. It was a good day when he was able to stop it. Will you always have to take it?

    • #26740
      Colleen Steele
      Keymaster

      @rgiustin I’m thinking you are right, co-existing autoimmune disease with PH might be something many deal with. I do know it was something they tested my son for when he was diagnosed with PH so there must be a reason for it. Thank you for sharing your personal struggle with us.

      As @jim-sparrow pointed out, your comment about making sure your different care teams are in coordination is spot on. They really need to communicate with each other. Especially when changing medications or increasing dosages I ask the prescribing doctor to please make sure he updates the rest of my son’s team. I often follow-up and make sure they did.

    • #26777
      Steve Stiffelman
      Participant

      Hello all,

      Jen asked me about side effects from CellCEPT. Skin cancers have popped up all over me. I see a dermatologist every 3 months. I have lost a lot of teeth and I do experience a ton of GI problems. I can’t tell whether the GI problems are caused by medicine or scleroderma. My body can’t fight infection. I am so careful avoiding the virus.

    • #26785
      Jen Cueva
      Keymaster

      Hi @steves, I had no idea that CellCept could cause skin cancer. I am sorry to hear of this side effect. I mostly had heard from friends about their issues, as I mentioned previously about the GI side effects. I am happy to hear that your dermatologist is watching you closely. How long after you started CellCept did you notice the skin cancers?

      Another issue you mention is tooth loss, wow. I am sorry, Steve, and know that with PH and your autoimmune issues, along with skin cancer, you must be careful. I am happy to hear that you are so cautious about avoiding this virus.

      Thanks for sharing, I will mention these two to them as well.

    • #26807
      Jerri Modrall
      Participant

      I have several autoimmune disorders; Type 1 diabetes, Celiac Disease, Ulcerative Colitis/Crohn’s, Rheumatoid Arthritis, Ankylosing Spondylitis…as well as as a connective tissue disease called Ehlers-Danlos Syndrome—all of which probably contributed to my PH and CTEPH. Especially the EDS.

    • #26851
      Valerie
      Participant

      Hi!
      I’m very sorry you guys have this. I’m one of those people. In addition to PH, I have a demyelinating disease (maybe it’s multiple sclerosis). Because of all these diseases and their various manifestations, I have been reading a lot of books on biological chemistry recently.
      I have come to the conclusion that often our diseases are caused not by physical defects, but by chemical ones. I mean that physical disabilities (for example, due to birth trauma) are understandable, visible and explicable. Heart, lung, and especially autoimmune diseases are mostly microscopic chemical failures in the body caused by the same microscopic chemicals or reactions.
      I have not studied biochemistry so much, but I have already realized that, for example, even in our blood, in addition to red blood cells and platelets, there is a huge variety of different substances and cells. We don’t see them and we don’t know anything about it. Perhaps, if you look very, very deeply, all the diseases in one particular person are related. For example, first some virus got into the body, because of this some cells of the body changed and systemic lupus appeared. Lupus damaged something and developed bronchial asthma. Because of asthma, there were some substances and reactions that led to PH. I’m just speculating, but why wouldn’t that happen to someone? Our body is probably the most complex system. I think our doctors do not know and cannot know all this information, because it is a huge complex knowledge, and for this they must know chemistry very well.

    • #26876
      Jen Cueva
      Keymaster

      Hi @modbod115, I am sorry to hear that you have so much to deal with along with PH. I have only heard of EDS once before, I believe. Do you have the vascular type? It would make sense because you also have PH.

      How long have you been dealing with these autoimmune diseases? It must be challenging to figure out which came first. The symptoms of one can easily be similar to another. What would be your best tip for newbies dealing with some of these same illnesses?

    • #26877
      Jen Cueva
      Keymaster

      Hi @valeriekv, you make some valid points. It is great that you are reading to gain a better knowledge of chemistry. As you mention, our bodies are so very complicated. Plus, the doctors see hundreds, if not thousands of patients. How can they possibly know everything about us all?

      Reading and pointing out certain things to our medical team can be beneficial. Often my doctors appreciate when I bring up things to discuss. I realize that some think otherwise. They do not want patients and families coming in, “playing doctor,” as I was once told. I fired that doctor, hehe.

      I hope that you find some answers soon about your demyelination disease. The waiting for answers is often the most difficult.

    • #26878
      Jen Cueva
      Keymaster

      Hi @jim-sparrow, how long did it take to get your diagnosis of MMN? I noticed that that was back in the 80s. Is there anything that you are doing as far as a treatment like IVIG or anything? I am in the process of working with a neurologist on some health issues and trying to get answers. I find these symptoms interesting, and many are similar to what I have experienced off and on.

    • #26885
      Jim Sparrow
      Participant


      @jenc
      — It took me about 18 months of complaining to my GP and Endo before I took matters into my own hands and went to the ER. I was lucky enough to get a neuro consult and that started the process (this was summer 1988). Once they’d established I wasn’t suffering from damage to my brachial plexus, they did a number of EMG’s, massive amounts of blood work and spinal taps, and finally established I had what was then called “demyelinating peripheral motor neuropathy with local conduction block”. We now call it multifocal motor neuropathy.

      The diagnosis process is really a matter of elimination (is it MS? ALS? MG? Diabetic Neuropathy? CIDP?), and it can take quite a while. Neurologists are notoriously difficult to get a consult with here in Canada, which could add 6-9 months to your waiting time.

      I’m in Alberta Canada, and at the time there was only one other known patient with this condition. I went for 2nd and 3rd opinions in Toronto and Mayo (Rochester), they both confirmed the diagnosis.

      In Canada at the time, IViG wasn’t approved for use for this disease, so the only options were Apheresis, Steroids and chemotherapy. Unfortunately for the next 3 years I tried them all with no success.

      My neurologist successfully found funding for a double blind study with IViG in 1992, I was patient #1 and have received gamma globulin regularly ever since (28 years). Originally I was getting 90 IV infusions a year. Over the years the product has become more purified and concentrated, I now need only 35 infusions / year (2 every 3rd week).

    • #26891
      Jen Cueva
      Keymaster

      Wow, @jim-sparrow! What a journey this has been for you. Thanks for sharing your experience with us. I am currently consulting with a neurologist and know that it may take a few more tests to get some answers.

      I am grateful that in time, things have been more available for you. Still, 35 infusions seem like a lot to me. But I guess when you were doing 90, this is a considerable decrease. This must be a challenging time this year with the pandemic. Have you been able to have your infusions for the last several months?

      To think this is only your journey for this illness, PH and others are adding to the mix. Take care of yourself.

    • #26955
      Jim Sparrow
      Participant

      @jenc

      This must be a challenging time this year with the pandemic. Have you been able to have your infusions for the last several months?

      Jen – The infusions continue, almost without missing a beat. Of course the Day Medicine unit at the hospital has strict triage protocols in place, and to be honest I feel far safer being there than I do the grocery stores (our city implemented mandatory masks for everyone in a public space).

      I hope everyone else is dealing with the pandemic issues ok. While many of my doctor’s appointments are still virtual (phone or Zoom), some do require physical appointments.

    • #26963
      Jen Cueva
      Keymaster

      Hi @jim-sparrow, I am happy to hear that your infusions have continued through this pandemic. I do know that my cancer/infusion center is open as they with chemo and other IV meds just cannot stop. Yes, I also agree that the centers are much safer than the grocery store.

      Here in Texas, we also have a mandatory mask order. But, I do think it ends at the end of the month. I believe that they will extend it.

      Is that the only appt besides labs that you have been in person versus virtual?

    • #26975
      Denise K Thompson
      Participant

      Wow, you folks are dealing with so much. I truly feel your struggle. A positive ANA & a rash brought me to the rheumatologist several yrs ago. I’m taking hydroxychloroquine for some type of autoimmune disease, but doc keeps going between Lupus & Crest, mostly because of the PH. Sjogrens is thrown in also, for which I take Pilocarpine. The PH, by far, is my #1 concern, regarless of how I got it. At this point my kidneys are good & outside of some skin, eye, mouth & nose problems, I don’t find them to complicate my health that much.

    • #26988
      Jen Cueva
      Keymaster

      Hi @dinky1952, it sounds like you have a lot to deal with also. PH alone is enough, right? Then once we start adding in other health issues, things become that much more complicated. I am grateful to hear that your kidneys are OK. I hope that this continues for you.

    • #27029
      Darla McCollim
      Participant

      I have a pile of autoimmune diseases, Rheumatoid Arthritis, Polymyalgia Rheumatica, Hashimotos thyroiditis, pernicious anemia, IBS, dry eye syndrome. Then add fibromyalgia, osteoarthritis, prednisone induced osteoporosis and I just last week got the official diagnosis of PH. Started O2, and high pressure CPAP. Happy that I’m in the early stages of PH.
      The thing is all my lab work indicates aggressive therapy for the RA is working very well keeping down the inflammation, but I have a wedge shaped portion of my right upper lung that isn’t perfusing and my pressures in my lung and heart are elevated. It feels like all the injections,pills, meditation etc has been a waste of the last 5 years.

    • #27047
      Colleen Steele
      Keymaster

      @darlarayne you really do have quite the cornucopia of health problems. I’m so sorry you have to deal with all that. When you mention your medications being a waste, are you referring to your autoimmune diseases? Has your doctor prescribed any PH medications other than O2 and CPAP. Even though you are in the early stages of PH, starting some sort of treatment could help stave off progression longer. Your heart and lung issues I’m assuming are PH related? Are you seeing a PH secialist?

    • #27216
      Renee Kimberling
      Participant

      I have RA, but I have never been told it caused my PH. They got diagnosed very close together, though. My rheumatologist keeps track of my pulmonary fibrosis as well as my PH, and the docs have coordinated on meds. One of my RA Meds, ARAVA, is supposed to help with pulmonary issues. So far, so good!

    • #28962
      Gemma
      Participant

      Hi,

      I have IPAH, diagnosed early 2014 (pressure 52) and have been stable for the last 4-5 years and now classified as having mild ph (pressures around 26). I am a responder so am on calcium channel blockers, along with other meds.

      In the last few years I’ve had further incidents occur to me which up until recently I thought were totally separate and unrelated but having seen a physio for a neck related injury she believes I have an autonomic dysfunction going on.

      In the latter years I’ve randomly had vertigo, pericarditis and sleep apnea (all things the doctors have been surprised at given I’m relatively healthy, not overweight and not had any particular trauma that would cause the vertigo). I also pre PH was diagnosed with coeliac disease and raynauds.

      I’m not really sure of my question as I’m still very much in the early days of trying to understand if there is a link between my ph and auto immune disease but just thought would share my story and see if anyone resonated with what I’m going through.

      Thanks

      Gemma

    • #28979
      Carol Volckmann
      Participant

      WOW my heart goes out to all of you struggling with PH and autoimmune issues. My PAH was caused by Sclaraderma. I believe the biggest issue Sandy can take away from all this is … it is vital that you have your doctors work together as a team for you. I have 2 Pulmonolgists one in Los Angeles whose special interest is autoimmune causes for PH and PAH. My 2nd Pulmonolgist is here in Seattle and so is my Rhumotologist. All visits, medications and recommendations are shared. They also listen and are interested in what I may have learned from other sources such as this forum or articles that I have read. Jen is right, if your doctor isn’t interested what you have found – fire him/ her!

      The sites Colleen suggested will be a great resource.

      Most of all, do not fear the unknown – you want to know as much as you can so you can take the action that is right for you.

    • #28980
      Jimi Mcintosh
      Participant

      PH , RH, now Lupus, it is like a house, you keep adding onto it until it all comes together. Mine seems to have started with Avascular Necrosis, 2 hips later RH, COPD, CHF, AFIB,CKF, allergies. I worry about the steroids, which attack the immune system.

      This disease is like alphabet soup, you got all the letters. I have yet to get a definitive diagnosis on what came first and how could it have been detected and treated, before so much damage was done.

    • #31475
      Jen Cueva
      Keymaster

      A new member, @skygerhart, share the information below. I know that several here have PH and scleroderma. She also shares her nervousness about a right heart cath, if needed.

      “Some background info….I was diagnosed with Scleroderma almost 4 years ago. My RSVP on echocardiograms has been trending upwards. My most recent RSVP was a 45, which my Rheumatologist said would be the point that he would recommend a right heart cath. I have an appointment with him next week, and I expect that he will want me to complete the right heart cath. My BNP level and 6 min walk test are good. I’m waiting on results from my PFT. I’m nervous about undergoing a right heart cath, but I do understand it’s the only way to truly diagnose PAH. Any advice will be greatly appreciated! Thank you!”

      Let’s help Susan by sharing our experiences with scleroderma and right heart caths. You are correct, Susan; the right heart cath is the golden standard.

    • #33922
      Colleen Steele
      Keymaster

      I know many of our forum members also have autoimmune diseases. Thought it’s time to revisit this topic and see how all of you are doing. Any changes, improvements or new treatments you would like to discuss? How are you holding up emotionally?

      To those who previously responded to this post – how is the tug of war between PH and your autoimmune disease going? We would love to hear from you again.

      @dawnt
      @jim-sparrow @steves @sandydenn @dinky1952 @darlarayne @renee @gemsy-elizabeth @jimi @cdvol3gmail-com

      • #33926
        Carol Volckmann
        Participant

        Dawn, it is good to hear your Scleroderma is pretty stable.

        When I was diagnosed my systems were under control. I was surprised to hear it was Scleroderma that caused my PAH. Unfortunately it has now also caused cirrhosis of the liver, enlarged spleen and bowl inconvenience. That is the bad news, the better news is I am stable and able to deal with these issues pretty well.

        It is absolutely amazing how your body can still cope with so many issues. I was diagnosed 17 years ago now 78 and plan on many years to come.

        Wishing you well Dawn. You sound like a very strong person – sending you air hugs. Be well and safe.

         

        • #33934
          Jen Cueva
          Keymaster

          Hi @cdvol3gmail-com, although you’re dealing with progression with your SCL, your thoughtfulness to Dawn is heartfelt. I’m so sorry that your scleroderma has affected your liver, spleen, and bowel. How are you doing with your ostomy, BTW? Did you do alright with the new bags during your travels?

          You’re right, 17 years of this journey, and you continue to kick butt and inspire me and others at your young age of 78! You’re a strong woman yourself; never forget that and how much you continue to endure daily. Kudos to you, my sweet PHriend.

          Hugs to you and @dawnt, both from sunny San Diego.

        • #33936
          Carol Volckmann
          Participant

          Thank you Jen for your continued support and thoughtfulness.

          For our road trip I used the closed-end disposal pouches. It really worked well. I did not have to dump in the motorhome nor in our daughter’s home

          I was fine until the day we left. That night I came down with a nasty intestinal bug – not fun. But, the good news was knowing the disposable pouches are doable.

          Right now I am on a special diet prior to my breathing test on  the 22nd. I sure hope this test will give me some answers to my bloating!

          Take care my friend. Please find some time today to lay low. Sending love ❤ and hugs 🤗

          Oh, we had our 2nd boosters yesterday. Are you going to have your booster or is it too early?

        • #33948
          Jen Cueva
          Keymaster

          Hi @cdvol3gmail-com, you’re too kind. I’m happy to hear that your closed-end disposable pouches worked. But sorry to hear about that stomach bug. That must have been a challenge and messy situation. Hopefully, that is resolved for you by now, and you’re eating and keeping hydrated.

          Aww, finally, your SIBO test is on the 22nd. That should offer some answers to your uncomfortable bloating; sorry that you’ve been dealing with that for so long. I’ll be crossing my fingers and sending you positive thoughts and prayers that day.

          Yes, I plan to get my booster at the end of the month when I see my new PCP. Kudos to you and Dick for getting yours done.

          Take care of each other- I’ll make a little time to lie low this afternoon. Thanks for your thoughtfulness, sweet lady.

        • #33943
          Dawn
          Participant

          @cdvol3gmail-com, thank you for the kind comments and well wishes. I like to think of myself as being a strong person, but often doubt that. I appreciate the air hugs too! It’s reassuring to hear updates from people like you who have dealt with these medical issues long term. I wish you didn’t have to deal with them, but it’s reassuring to know there is hope for having years of living still. I totally agree, it is amazing what our bodies can deal with and keep going. Your strength is something I can aspire to.  Hugs to you as well.


          @jenc
          , I am keeping up with stretches for my fingers & hands. Any sort of tightness I notice there or otherwise I try to do stretches.  I’m feeling pretty comfortable with my rheumatologist, so I would let her know of any concerning issues. Hugs to you, too!

        • #33949
          Jen Cueva
          Keymaster

          Hi @dawnt, that’s great news that you feel comfortable with your new rheumatologist. I think we must suppose that level of comfort and trust to make any doctor-patient relationship work. Thanks for that important reminder. Many continue to see doctors who lack this level of confidence and ease. I’m one to look elsewhere if I don’t get this feeling.

          Hugs right back at you, sweet PHriend.

        • #33993
          Colleen Steele
          Keymaster

          @cdvol3gmail-com thank you for sharing a reminder that offers hope, “It is absolutely amazing how your body can still cope with so many issues.”

          17 years is a blessing and I’m praying for many, many more for you.

    • #33924
      Dawn
      Participant

      Hi @colleensteele. I’ve had little change in my limited scleroderma symptoms since I was diagnosed. I was initially seeing my rheumatologist every six months, am now seeing her once a year unless something comes up that needs an appointment.  My dr always remarks that I still have all my digits, sounding surprised that my raynauds hasn’t taken any digits yet. The thing I notice most is that the skin on my hands and over my knuckles seems to be getting somewhat tighter. I don’t typically have my hands flat when relaxing them, but rather the fingers are usually slightly curved. I do stretches to try and help my hands and fingers and so far it seems to help.

      • #33933
        Jen Cueva
        Keymaster

        Hi @dawnt, I’m happy to hear that your SCL symptoms have been pretty stable. Moving your appointments from every 6 months to every year is a huge positive. Please keep doing your stretches for your hands and fingers and let them know sooner if you see an increase or any new symptoms.

        Thanks for sharing your update, Dawn, and thanks, @colleensteele, for revisiting this topic.

      • #33991
        Colleen Steele
        Keymaster

        @dawnt a once a year visit for anything is a good sign that things are somewhat stable. I didn’t realize how serious scleroderma can get and that you could lose “digit” as you put it. Did you remind your doctor that you are a PHighter and a pro and beating statistics?

        • #34024
          Dawn
          Participant

          Hi @colleensteele. I have ‘limited’ scleroderma, also referred to as crest syndrome. It typically affects the lower arms and legs, but can also affect internal organs. I’ve had raynauds (part of crest syndrome) for many years, long before I was diagnosed with scleroderma. If you don’t carefully monitor your raynauds, you can get sores, infection and eventually need amputation. My raynauds has always affected mainly my hands and fingers, and apparently still having all my fingers fully intact impresses my rhuematologist!  It impresses me, too!

        • #34026
          Colleen Steele
          Keymaster

          @dawnt I am so sorry you are dealing with these co-existing conditions but thankful that you are open to discussing them in the forums. I’ve learned a lot about other diseases from you and other forum members.

          Keeping you in my prayers.

    • #33979
      Sandy
      Participant

      Hello everyone and thank you, Colleen, for revisiting the situation of PH plus autoimmune disease. I have been viewing but not participating in this site for 2+ years because my life has been somewhat insane: hubby had surgery and chemo for stage 3 pancreatic cancer; I was hospitalized for congestive heart failure with no warning: and then hubby had to have open heart surgery to replace his aortic valve. Bottom line… he’s doing great and all of the stress and caregiving have wreaked havoc with my PH and scleroderma.
      My SOB has advanced some, I have been completely unsuccessful at losing any weight (which I need to do badly), and my joint pain and stiffness are more frequent. I have recently changed my PCP to someone who seems much more in tune to my complicated body. She respects my choice to avoid steroids as long as possible due to their side effects.
      So here’s my request for help… I have been researching the impact of diet on autoimmune diseases such as scleroderma, RA, etc. and I am gearing up to try eating vegetarian for several months at least to see if removing meat from my diet has any impact on my joint pain and stiffness by reducing the inflammation in my body. Have any of you tried this approach, read any research, or know of someone who has tried it? I’m also hoping the change might shock my metabolism and help me lose some weight.
      Your thoughts, please. Be well and thanks for listening.

      • #33980
        Carol Volckmann
        Participant

        Hello Sandy, you and your husband have certainly been through a couple of really tough years. So glad to hear your husband’s surgery and recovery are going very well!

        Like you, my Scleroderma caused my PAH. The PH is pretty stable, but the Scleroderma has started causing many issues with my gut, liver, spleen etc.

        A number of years ago I was over weight which made issues even worse. Even though I was not considered obese I changed the way I eat. I did not diet I just ate less of everything I did eat. I loss 40 lbs and stable where I am. A large meal is not appealing at all any more.

        Reading your message really glad you found a new PCP you like and trust. Are you also seeing a Rheumatologist who specializes in autoimmune diseases? If so have you asked them or your PCP for a referral to a Nutritionist who also specializes in autoimmune diseases?

        Becoming a vegetarian may be very helpful in loosing weight, but you want to make sure you are getting enough protein and a balanced diet.

        I think one of the biggest problems with a particular diet is … as soon as you go off it the tendency is to put the weight right back on. That is where a really good Nutritionist could be very helpful. And, one who would together as a team with your PCP and Rheumatologist.

        Wishing you a real step forward in a positive direction. My heart goes out to you – it is such a tough battle, but you sound like a very strong lady.

        Sending you air hugs 😊🤗

      • #33992
        Jen Cueva
        Keymaster

        Hi @sandydenn, you certainly have had a tough season between your PH and scleroderma and your husband’s medical procedures and health. I’m sorry that you have been trying to be the caregiver who has caused an increase in your symptoms. I’m grateful knowing that he’s doing much better now with recovery.

        Have you mentioned this to your medical team about trying a vegetarian diet? Most think protein will help with weight loss, but I have read that anti-inflammatory diets benefit many health conditions, autoimmune diseases being a top one. My daughter is a dietician, and she wanted my mom to try an anti-inflammatory diet for her autoimmune disease. I tagged you in a few other topics that we shared before, One is the anti-inflammatory diet, and the other is a plant-based diet. Please let us know how things go and what your medical team says and recommends.

        I’m keeping you and your husband in my thoughts and saying a prayer that you will continue to push through this challenging season without further complications and healing for your husband- hugs coming from San Diego.

        • #34001
          Sandy
          Participant

          Hi folks and thanks so much for your support and suggestions.  I have read all of the info passed on by Jen re:anti-inflammatory diets and found some excellent suggestions.  I especially like the “dark chocolate in moderation” part : )  I have worked with a dietician in reference to keeping my congestive heart failure under control but I think I need to take the next step to focusing additionally on inflammation control.

          All of you are dealing with challenges every day just like me that many folks just don’t understand or recognize.  I watch people going for a nice long walk and feel sorry for myself because I can’t go two blocks without panting like a steam engine.  I’m really looking forward to our community pool re-opening in late May because water exercise is the very best thing in the world for my breathing, inflammation, and weight.

          So . . . enough whining for now.  Hubby still doing great . . . his body has served him in an amazing way and we are so very grateful.  I am working on my head to get started on a better food plan for me and I’m expecting that I will see some good results.  I’m also working at getting my positive attitude back . . . pushing past the fatigue . . . laughing a lot . . . just appreciating being alive.  Be well everyone and know that I truly appreciate the help from this forum.  Wish we could all meet each other.  So long for now from the mountains of western North Carolina.

        • #34005
          Jen Cueva
          Keymaster

          Hi @sandydenn, I can’t imagine how challenging this has all been for you. I am happy that you have come back to join us and share some of your updates.

          That’s great that you have a dietician for CHF; maybe you can ask them about the anti-inflammatory diet for your autoimmune disease. I’m grateful that you found some of the information about the diet that I tagged you beneficial. Yes, any diet with chocolate can’t be bad, right? Hehe.

          I love that you mention you are getting your positive attitude back and laughing more. Laughter indeed does help. Do you enjoy comedies? After COVID, I watched many comedies on Netflix and Amazon Prime to help me laugh more.

          I bet it’s beautiful there right now in the NC mountains. I think @cdvol3gmail-com lived in the NC mountain area before moving to Washington state.

          Do you have family and friends near to help support you? No need to apologize for “whining”; vent away anytime. That’s why we are here. Thanks for your kind words and well wishes, Sandy.

          I’m sending you hugs from sunny San Diego.

      • #33994
        Colleen Steele
        Keymaster

        @sandydenn I feel bad that we didn’t check-in on you again sooner. You and your husband have been through so much since we last spoke. My heart goes out to you. Being a caregiver with serious health concerns of your own must get emotionally and physically exhausting. What do you do to make time for yourself?

        Congratulations on finding a doctor who provides you the care and understanding that you deserve. That is a huge accomplishment since we last talked.

        You are always welcome to follow the forums without sharing, but whenever you want/need to, we will be here for you!

    • #33988
      Jen Cueva
      Keymaster

      Hi @valeriekv, I saw your name pop up and realized that I hadn’t seen you update. How are you doing? I’m sure that you continue to research and learn about your multiple health conditions and PH.

      • #33996
        Valerie
        Participant

        Hello, @jenc!
        Thank you for asking! Yes, I’ve been very busy. I had to go to the hospital. I was diagnosed with multiple sclerosis (because of this, I saw poorly). I received injections in the hospital, which urgently relieve inflammation. Now I’m waiting for my turn to get pills. The pills should prevent a new exacerbation.
        I have been trying to get an appointment with a cardiologist and an ultrasound doctor for a very long time! In the hospital, I was examined by two ultrasound doctors. But they are not very well versed in such situations. They said there were no differences from the previous survey. However, I want to get to my ultrasound doctor.
        You’re absolutely right. I continue to study scientific articles. I am becoming more and more convinced that due to pulmonary hypertension, many of us have autoimmune diseases. Due to hypertension, blood vessels are damaged, which causes immune cells to help. Due to overloads, the immune system can go crazy. Of course, it’s more complicated actually. But this thought at least gives some understanding of what went wrong.

        • #34002
          Sandy
          Participant

          Valerie, my thoughts and prayers are with you.  I truly hope that you get the medical help that you need sooner rather than later.  I just posted a few moments ago about wanting to get back in the water to help with my inflammation.  Have you consider water therapy for your MS?  I had a woman in my water class some years back who has MS and she dons a wet suit (to stay warm) and exercises in the water.  It works very well for her.

          Sending you a hug and a smile.

           

           

        • #34011
          Valerie
          Participant

          @sandydenn
          Thank you very much. I hope so too! To do this, I will have to wait for the approval of a large number of legal and medical papers. Now there are so many people with autoimmune diseases… So many young girls with multiple sclerosis… I’m a little scared.
          I love water, but I have enough strength to swim two meters. Unfortunately, classes in the pool are not for me at all. It’s good that there are people who it helps (wetsuit – wow!). I’m glad to hear that you’re doing well with this! What a pity that the pool in your city is closed now. In my city, the pool is closed in summer.
          You mentioned that you can’t walk two blocks without shortness of breath. Don’t worry, you’re not the only one! I can’t walk one block without shortness of breath. We all need a positive attitude. I plant flower seeds at home. If the plants grow and bloom, it will be great! Don’t you do something like that to cheer yourself up?

        • #34033
          Jen Cueva
          Keymaster

          Hi @valeriekv, I love how you shared how you enjoy planting seeds and hope for blooms. Taking time to do things that help us feel better and not focus on our health does much for our overall health.

          It’s only natural to feel scared with another diagnosis, like MS. Please know that we are here to support you and want to know how things are going as you continue this lengthy process.

          Your kind words to @sandydenn are heartfelt. WE do all have limitations, and we can remind others, as you do, that we are not alone in this PHight. Thanks for that kindness.

        • #34006
          Jen Cueva
          Keymaster

          Oh no, @valeriekv, I’m so sorry to hear about your addition of an MS diagnosis. Are the pills you waiting for a new one? I know that there are several MS clinical trials ongoing around the world. BioNews also has an MS website and community. I think you may find some resources there. They also have a forum. A close friend, Jenn Powell, has MS and does a podcast for MS News today.

          You’re probably correct; many of us probably also have autoimmune diseases.

          The ultrasounds you are mentioning, is that your heart, aka Echo? That’s a positive with no changes, but I agree with you and want my usual doctor to compare it. Can you at least have them compare the results if you can’t get in for an appointment?

          I can’t imagine how challenging managing your many health conditions, Val. How are you coping with it all? Please let us know how we can best support you. I’m sending you hugs from SD.

        • #34012
          Valerie
          Participant

          @jenc
          Thank you for your kind words! Of course, I didn’t really want to get another diagnosis. But what can I do…
          Yes, I know about BioNews MS website! I found it through the PH website. I’ve suspected MS for the last couple of years or so. I’ve read a few columns by Jenn Powell, I like that. Thanks for mentioning it! This is also a very useful site, just like this site.
          Yes, you’re right, ultrasounds is an Echo. Maybe I’m not explaining it exactly. Doctors in the hospital may not know what to consider specifically. My ultrasound doctor has been watching me for twelve years. He is experienced and understands more about heart defects and PH. I hope to come to him in May and show the conclusion of the hospital doctors. At the same time, get to a cardiologist-pulmonologist. Because of the endless snowfalls this winter, I had to postpone all these trips for so long.
          It’s hard for me to cope with all this, but it’s not easy for all of us. Especially to such caring moderators of the forum! Thank you all for being so lively and having such a friendly atmosphere here! That’s great!

        • #34034
          Jen Cueva
          Keymaster

          Hi @valeriekv, I’m happy to learn that you’ve found the MS News Today website helpful as you deal with your MS diagnosis. They have some excellent columnists who write for them, too. I’ve found that the columns and podcasts I can relate to, although I don’t have MS.

          Indeed, I understand why you want your usual ultrasound doctor to offer his thoughts. The ones who perform these Echos for PH and other cardiac reasons are well versed—one who knows you that long will hopefully pick up any slight changes.

          Hopefully, the weather there warms up, and the snow will be done before long. I can’t imagine how difficult this makes it when you have to postpone your essential medical appointments.

          Thanks for your encouraging words. I’m grateful, and my heart is whole, knowing that you benefit from the forums. As far as moderators, I credit @colleensteele for her gentleness and empathy. Like you, I find the forums helpful as I continue to learn from y’all daily. Plus, y’all hold special places in my heart.

        • #34066
          Valerie
          Participant

          @jenc
          The snow melted and thanks to this I was able to get to the doctors! Not to all doctors yet, because it takes about five hours to get there and back. It’s a little heavy. But at least it’s something. I think it’s almost summer in San Diego, isn’t it? If you get hot, I’ll send you some cool wind, lol!

        • #34084
          Colleen Steele
          Keymaster

          @valeriekv I think of you often and the challenges you face just trying to be seen by a doctor. Good to hear you made it to an appointment. Fingers crossed you can work more in during the summer.

        • #34097
          Jen Cueva
          Keymaster

          Hi @valeriekv, I’m so happy that your snow has melted and you made it to some appointments. Hopefully, that went well, and you will continue to make these appointments as the weather warms.

          It’s currently about 64 degrees but has been in the ’70s. We had some showers this AM. But I’m not hot yet. I did relocate from near Houston, Texas, so hot and humid temperatures were the usual there. Thankfully it’s not as heavy here and not as warm, for the most part.

          Take care and enjoy your weekend, Val.

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