August 12, 2020 at 2:18 pm #26689
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.
August 12, 2020 at 3:09 pm #26699
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.
August 12, 2020 at 4:31 pm #26703DawnParticipant
@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.
August 13, 2020 at 11:24 am #26706
In addition to PH, I have 3 other autoimmune diseases:
1/ Type 1 diabetes (’64)
2/ Multifocal motor neuropathy (’88)
3/ Systemic lupus (’96)
August 13, 2020 at 1:18 pm #26709
@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.
August 13, 2020 at 4:01 pm #26717Steve StiffelmanParticipant
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.
August 13, 2020 at 4:27 pm #26719
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?
August 13, 2020 at 4:34 pm #26720
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.
August 14, 2020 at 7:34 am #26727Roxanne GiustiniParticipant
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!
August 14, 2020 at 7:56 am #26728
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 😊
August 14, 2020 at 4:26 pm #26739
August 14, 2020 at 4:32 pm #26740
@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.
August 17, 2020 at 6:12 pm #26777Steve StiffelmanParticipant
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.
August 18, 2020 at 10:05 am #26785
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.
August 19, 2020 at 11:15 am #26807Jerri ModrallParticipant
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.
August 21, 2020 at 3:37 am #26851ValerieParticipant
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.
August 22, 2020 at 10:10 am #26876
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?
August 22, 2020 at 10:19 am #26877
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.
August 22, 2020 at 10:23 am #26878
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.
August 23, 2020 at 7:59 am #26885
@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).
August 24, 2020 at 1:27 pm #26891
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.
August 27, 2020 at 10:47 am #26955
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.
August 27, 2020 at 2:34 pm #26963
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?
August 28, 2020 at 12:00 pm #26975Denise K ThompsonParticipant
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.
August 31, 2020 at 9:16 am #26988
September 1, 2020 at 8:54 pm #27029Darla McCollimParticipant
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.
September 2, 2020 at 1:02 pm #27047
@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?
September 13, 2020 at 6:36 pm #27216Renee KimberlingParticipant
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!
February 4, 2021 at 1:58 pm #28962GemmaParticipant
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.
February 4, 2021 at 3:42 pm #28968
@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.
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.
- This reply was modified 7 months, 2 weeks ago by Colleen Steele.
February 4, 2021 at 5:18 pm #28979Carol VolckmannParticipant
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.
February 4, 2021 at 7:53 pm #28980Jimi McintoshParticipant
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.
August 16, 2021 at 11:07 am #31475
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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