Viewing 15 results - 1 through 15 (of 24 total)
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  • #31820
    Carol Volckmann
    Participant

    G’Day back at ya Terry. My Raynauds was caused by Sclaraderma which also caused my PAH. I might not know how to spell but these achcromins drive me crazy 😫 thank goodness for spell check!

    Have a good rest of the week and do something nice for you and your wife 😊.

    #31819
    Terry
    Participant

    G’Day Carol,

    Mate not a silly question at all. I was diagnosed with Raynauds 30 odd years ago and it could well be the underlying cause of my GCA and PAH . I suppose I’m looking for the trigger.
    D’ont you just love the new language with technology. GCA,PAH ,LOL,RUOK. No wonder I can’t bloody spell anymore and had to look up words three times above. Or is it my old age . Na no worries mate.

    #29552
    ram
    Participant

    I have PH, hEDS, asthma, Raynauds, hypothyroidism, lymphedema, many allergies, psoriasis, and I likely left something out. I am happy to be here, although I wish I had no reason to be.

    • This reply was modified 6 months, 3 weeks ago by ram.
    #29308
    Colleen Steele
    Keymaster

    Thank you @terry, @cdvol3gmail-com, @gemsy-elizabeth and @dawnt for sharing your personal experience and for asking questions about Raynaud Syndrome. It is so helpful when we hear that we are not experiencing symptoms and coexisting conditions alone.

    #29292
    Terry
    Participant

    I was diagnosed with Raynauds around 25 years ago and was told to take (can’t remember)high blood pressure tablet before going out in the cold . It kind of worked ,toes and hands still went numb ,white etc,etc. . 12 years ago I saw a new doctor and when he read my history he told me the story that he goes to the Antarctic every eighteen months or so as the base doctor and on one of his trips down he noticed a group of ships crew working on the foredeck in freezing weather with only short sleeve shirts on (Swedes)He asked them how they can work in sub zero temp with so few clothes on and they showed him a tablet they take 20 mins. Before hand.
    felodipine.
    Ever since I started taking the tablet daily I have not had a reoccurrence of any significance.
    HOWEVER
    I was diagnosed with severe Giant Cell Arteritis in 2017.
    Lost eyesight in one eye a few times etc.etc. and put on prednisone (120mg reducing monthly) Five months into it had huge breathing problems and after three years finally diagnosed with PAH . I’m convinced they are all connected.
    Even now living in the subtropics I still take felodipine
    for high blood pressure .

    #29088
    Carol Volckmann
    Participant

    Hello All, I had to go through 2 Pulmonolgists before I found the right team and with a RHCath was diagnosed with PAH. I also had Raynauds by a Rhumotologist who specializes in autoimmune diseases. I was diagnosed with limited Sclaraderma. Working with these two and their team learned that my PH was caused by Sclaraderma and as it turned out the Pulmonolgist’s special interest is autoimmune diseases. My hands and feet do get very cold then hot and my hands do swell up that it is difficult to close my fist. I do have battery heated gloves and often need to put my hands in warm water. It comes and goes. I have been able to deal with the Raynauds without medication so far. As my Rhumotologist just told me on my last visit, why put poison in your system when you are able to tolerate for now. So much is connected that I feel it is so critical to have a good team working with you.

    Good luck on your appointments Cathleen and Gamma and Jen, I hope you can get your appointment with the Rhumotologist this Spring – right now, you probably have enough on your plate.

    Be well. Be safe everyone

    #29048
    Cathleen Hayes
    Participant

    Hello: I don’t have many answers, but this topic is interesting to me.
    I began having symptoms of shortness of breath in the summer of 2019. After several months of no help from my cardiologist or 2 different pulmonologists, I had to seek help at a Pulmonary Hypertension accredited center after recommendation from family. They were extremely wonderful and diagnosed my situation at my first visit of left heart failure and in January 2020 I had a Right Heart Catherization with diagnosis of Pulmonary Hypertension. Ok so somewhere along the line I had a blood test which turned out ANA positive. About the time of the Heart Cath I started to develop symptoms of Raynauds – fingers turning white, then blue, then red whenever they exposed to cold…..freezer, shopping in grocery stores, cold air conditioning; also my hands become numb at night as well as slightly swollen when I wake up and cannot close fingers into a fist, but this subsides once I am up. My Pulmonologist ordered blood tests which showed SCL-70 Antibody as <1 negative; and Centromere B Antibody >8 positive. I was started on Sildenafil for the PH and my doctor felt it may help the Raynaud’s symptoms. I’m scheduled to see a Rheumatologist in June but I really don’t have other symptoms so I am not worried at present. I am careful to keep my hands warm.
    Best wishes to you all.

    #29046
    Teri Lewis
    Participant

    Hello PH friends!
    As a newbie to this site, it’s wonderful to know that many of us manage the same lung challenges. I was diagnosed with PAH nearly 10 years ago, but didn’t start a treatment plan until 2015, when I was also diagnosed with Limited Scleroderma and ILD. (Interstitial Lung Disease) My other autoimmune issues include (Crest–Raynaud’s,Gerd, Telangiectasis, sclerosis in lungs, Sjorgren’s)
    Like many of you, I have a great team of doctors that all work with me at Anshutz UC Medical Center in Colorado…that coordinate my meds, monthly and quarterly tests, 6 min walks, lung function testing, echos right heart caths, etc…Unfortunately I developed lymphoma last fall and have just finished Rituximab infusions and starting to feel great!
    Breathing with any exertion has definitely been a challenge for the past 7 months, recovering from the lymphoma. Currently, I’m on 24/7 oxygen; 6 liters resting and 8+ when moving around to do anything. Living at an altitude of 6800 feet certainly doesn’t help…but it’s home!
    My pressures are running high right now after infusions.. (150-200) so I started diuretics. Fingers crossed they will work! I’ve been taking Letaris and Adcirca daily since 2015. I changed my diet, fluid intake, and exercise routine significantly when diagnosed in 2015…vegan, minimal processed, gluten free, 500 mg salt and drinking green smoothies for breakfast and lunch…which makes a huge difference in reducing my pressures! I also started a special breathing technique to open my lungs and build my diaphragm muscles for 50% more efficient breath. I’m an active 63 yr old, with my own cookie decorating business and I am constantly on the search for new techniques to give more quality of life and certainly quantity of years!
    If I can share anything that has made this journey a blessing…it’s a great support team and my faith that it’s all in Divine order and timing!

    #29030
    Gemma
    Participant

    I was diagnosed with raynauds at the same time I was diagnosed with IPAH in 2014 but they were convinced then my PH wasn’t related to any auto immune diseases and it was instead idiopathic. However given all the random things that have occurred to me along the years, I’ve now just realised are all mainly auto immune conditions I believe I do have auto immune disease and that could have triggered my ph all that time ago. I’m due to see my GP tomorrow to talk her through it all and next steps. Daunted but would be good to know if I can find out the cause of my ph. Out of interest has anyone with PH got multiple sclerosis?

    #29019
    Dawn
    Participant

    Hi @colleensteele. I’ve had raynaud’s for decades. I mentioned it to my primary care dr when I first noticed it, she gave me a prescription for amiodarone as our appointment was wrapping up, but we didn’t discuss it. When I was diagnosed with afib they had to take me off the medication, because of the medication needed for the afib. I hated giving up that medication because it really did help with the raynaud’s. Although I did a lot of reading about raynaud’s, I never fully ‘got’ that raynaud’s doesn’t often happen ‘on it’s own’. When I was diagnosed with limited scleroderma, I found out that the raynaud’s was part of that. I wish my doctors would have been catching the things I was missing. My rheumatologist, who I see for the scleroderma, is always amazed that I’ve still got all my fingers and toes and haven’t lost any part of any of them so far. It’s so random because things that trigger it one day may not trigger it the next day. Sometimes the feeling comes right back fairly quickly, other times I have to soak my hands in warm water, and other times it’s very painful when the feeling comes back. I don’t notice too much effect of ph on the raynaud’s.

    #28996
    Jen Cueva
    Keymaster

    I was told at one time that I do have Raynaud’s. But then was told the symptoms I was having were linked to my PH.

    Because my blood work looked OK was my reasoning. I still have been planning to see a rheumatologist sometime this year.

    I did find this from Cleveland Clinic that offers some excellent information.

    #28974
    Colleen Steele
    Keymaster

    Raynaud Syndrome is a condition in which body overreacts to certain situations causing cold and numbness in the hands and feet.

    We have had members briefly mention Raynaud Syndrome in random forums. I thought it would be helpful to start a topic just about this co-existing condition.

    I hope you will take a moment to share you experience and ask questions.

    @gemsy-elizabethh in particular would like more information about living with Raynaud Syndrome and PH.

    #28968
    Colleen Steele
    Keymaster

    @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.

    #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

    #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.

Viewing 15 results - 1 through 15 (of 24 total)

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