So what happenw now?

Posted , 3 users are following.

Hello,

How are you guys? So heres a little about my story well there is not much to tell. I had my little girl 2 years ago. While being pregnant i got sore ribs, breathlessness, sore round the whole area sore joints headaches fatigue. Typical pregnancy symptoms right?!? except they never went away 2 years later they sent me for some tests and a now diagnosed with sarcoidosis! So im not sure what this means or how it will affect me or what all my stand in surgon could tell me was reading from notes that in being transfered to a clinic for people with sarcoidosis any tips what i should amd shouldnt worry about questions i should ask ect ect any advice x

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  • Posted

    Hello,

    We have something in common in that I just had my daughter 1 year ago! I was just diagnosed this past August and I'm not sure how long I've had it.

    I gained about 50 pounds during my pregnancy so I thought that my sore joints were just from the added weight on my body. That was really the only symptom I had. My sarcoidosis was found by accident when I went to get an x-ray to try to figure out why i was having rib pain. Had a CT scan done and then a lung biopsy to confirm that it was sarcoidosis.

    This is all still pretty new to me as well, but I started seeing a pulmonologist who put me on 20 mgs of Prednisone daily. Which has completely gotten rid of my joint pain, but has a lot of long term use side effects.

    As far as what to expect, from what I've read, it seems like the symptoms vary from person to person. Good luck to you!

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    • Posted

      Yeah thats what i had just one sore rib it was put down to pregnancy but never healed awww congrats hope she is well. What is the medicine for if you dont mind me asking? Will you be taking it all the time? Xx
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    • Posted

      I thought i replied but for some reason it never went through. So how are you know? And baby??? Congrats!!! So what is the medicine for and will you be on it for life or is it just a temp relief? Do you get headaches by any chance? Xx
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    • Posted

      Thank you! We are doing well smile how about you and your little one? Was she your first?

      As far as the prednisone goes, it's common to use corticosteroids to treat symptoms and I believe just to keep the sarcoid under control. It sounds silly saying it but since i wasn't really having many symptoms I'm not 100% sure what the purpose of it is. But it's great not to have the joint pain anymore.

      It has not helped with the rib pain though. I've been worried that the pain in feeling isn't related to the sarcoidosis. It's only on the left side and one of my lower ribs has a spot that is painful to the touch. But when i move certain ways, i feel pain on the inside. I'm wondering if it's my pancreas or spleen because i believe sarcoidosis can cause enlargement of those organs.

      It's interesting you had rib pain as well. What does yours feel like?

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    • Posted

      Oh and I'm not sure how long I'll be taking it. I go see the pulmonologist Thursday to discuss how things are going. I'm hoping i won't have to take it much longer because it's not good for your bones sad he had mentioned eventually switching me to methotrexate ( which is usually used as a chemo drug) but i really dont want to take that because of the side effects and the fact that I'm still breastfeeding and it's not safe.

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    • Posted

      Erm its hard to explain my right lower side was sore i got the odd occasional sharp pain but it was never major it doesnt effect me all the time but its always there if you get what i mean. I always get a pressure feeling in my chest too. Yeah she is shes 2 now and pure amazing! What about yours is she your first xx
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    • Posted

      Hi Katid. I've had Sarc for over 20 years. It's the chronic form. Sometimes you can be lucky and get a one-off acute type. You are in the USA if you're on Prednisone ( in Europe, it's Prednisolone which is similar).It is given to stop your lungs getting inflamed by suppressing your immune system, which is overactive in Sarc. It's usually given in a high dose for a while until your x-ray shows you've stabilised, then tailed off. Problem is the side-effects like weight gain, mood swings and osteoporosis. So it IS a balance. I thought the effects were magic (no cough after 12 months of wheezing!) , bit glad to be in a period of remission and off the steroids. Friends on methotrexate tell me it is OK! Good luck !!!

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    • Posted

      Oh and van i ask what that is for? Seems abut extreme if you havent had that many symptoms? But then i no very little about any of it rolleyes awww breast feeding lasted a year but yes better not to take anything that can effect your lil one xxx

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    • Posted

      Im not anything yet im from the uk i got my diagnosis after dealing with the same symptoms for a few years but they are all very manageable. How do you know if its chronic or acute i wonder how long it take to where off if its a one off. Do you have to take these medications or can it get better on its own? Probably a stupid question x
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    • Posted

      Yes she is my first! I worry a lot more about my health now that she is here. This whole journey has been quite the scare. As I'm sure many others here would agree, it's terrifying hearing the words "we see some spots on your lungs" rolleyes

      But I'm glad that the sarcoidosis doesn't seem so bad for me.

      As far as the medication goes, Tyagi said it best ^ and I am in the US so i guess it's different here

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    • Posted

      Not at all stupid. Sometimes the acute form gets better by itself and never comes back. If you've had symptoms for 2 years it will be the chronic form which can come and go. The meds are to relieve the symptoms but there isn't a cure. I have it for life, but live a normal life with the help of inhalers these days. Mountaineering and deep-sea diving aren't going to happen. Or marathons. And that isn't a problem. One thing which doesn't help is stress!

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    • Posted

      Yes it probably is. Im not really sure im waiti g for my referal for a sarcadosis clinic to come in. Hopefully then will have more answers and i dont blame you hun our little ones are the most amazing little things eh! Its wcary worrying about the future for them aswell as us! So question in.america do you have anything like the NHS? X
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    • Posted

      So saying thay my symtoms are mild soes that mean i have a very mild form if the desease. And im glad your doing ok and living a normal life! Marathos are over rated anyways lmaoooo x
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    • Posted

      Hope you do have a mild form, Katid. I have friends who are severely ill. But you should get good treatment on NHS, and for free, unlike most other countries!
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    • Posted

      Where are you from??? And sorry to hear that im hoping to as ive been ok so far it was only really found by accident from rib pain. Its mainly thefact i always feel tired and the headaches i stuggle with my headaches get so bad!!!! And i dont even know if they are related yet x
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