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Do You Have PH And An Autoimmune Disease?
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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. -
@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?
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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!
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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
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@gemsy-elizabeth you do have a lot going on and I can only imagine how much it complicates determining what is triggering symptoms and how to treat them. I do know autoimmune disease and sleep apnea is common among PHers.
In regard to the vertigo. Co-moderator, @brittany-foster shared the following in the teen and young adults forum that might help you. https://pulmonaryhypertensionnews.com/forums/groups/teens-and-young-adults-with-ph/forum/topic/managing-dizziness-when-living-with-pulmonary-hypertension/
If you meant to say celiac disease here is a link where it is mentioned within the forums.
https://pulmonaryhypertensionnews.com/forums/forums/search/?bbp_search=celiac+Here is link where Raynaud Syndrome is mentions. https://pulmonaryhypertensionnews.com/forums/forums/search/?bbp_search=+Raynaud
I will start a topic for both of these in the our co-existing forum to draw more attention to them.
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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.
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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.
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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.
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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-
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.
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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.
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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?
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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.
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@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!
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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.
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@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.
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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.
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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.
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@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?
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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!
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@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.
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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.-
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 ????????
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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.
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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.
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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.
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@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!
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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.
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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.-
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.
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@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? -
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.
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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.
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@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! -
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.
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@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! -
@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.
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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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