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    • #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.

    • #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.

    • #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.

    • #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?

    • #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.

      • #29066
        Colleen Steele
        Keymaster

        @cathyhayes sharing your experience is very helpful to others, so thank you. You have been on a long journey to get answers and I’m happy for you that you finally got them. Even though the diagnosis is difficult to hear I found that there was some peace in finally finding out what was wrong with my son. It’s awful not knowing.

    • #29056
      Jen Cueva
      Keymaster

      Hi @cathyhayes,
      It sounds like you will have more information once you see the Rheumatologist this June. I was told at one time that it was possible, but later my blood work was OK. It’s frustrating to go back and forth and not know which illness the culprit is of specific symptoms.

      As you mention, continue to be careful to warm your hands. We are here along the way.


      @gemsy-elizabeth
      , please keep us posted on your appointment. I do not know of anyone with PH and MS, but it could happen.

    • #29077
      Gemma
      Participant

      Thanks @cathyhayes I saw my GP yesterday who doesn’t think I have auto immune disease based on my symptoms but I’m having lots of blood tests to rule in/out. I’m also going to have 2 MRIs one for the brain and one thoracic. Maybe MS or some other neurological illness, not sure but at least the tests hopefully will provide some answers. I’ve had an MRI before and it wasn’t a pleasant experience at all so feel quite daunted about the whole thing.

      • #29089
        Jen Cueva
        Keymaster

        Hi @gemsy-elizabeth, I am happy to hear that the GP did not think it was an autoimmune disease. But now, you are still waiting for answers. I am sorry to hear about your MRI experiences. I have a column that I shared about this; I will share it here.

        I had both of those MRIs for neuro like symptoms but never any answers. I hope that you will have some answers soon. Please know that we are here with you for support as you learn more.

    • #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

    • #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 .

    • #29293
      Terry
      Participant

      Sorry, I should add I am no longer on the daily prednisone however do take methotrexate once a week 10mg. and see a Rheumatologist every six months.

    • #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.

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