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So iv been diagnosed with Acute Sacoidosis as of last Thurs. Started with ankle pain in right ankle in Nov. gradually got worse and spread over Christmas to both ankles and my knee's. My ankles swell so big I was unable to walk or make it up steps without been reduced to tears. I was put on Ani-inflammatries for suspected Rheumatoid Arthritis which did not work when i returned to My GP who then sent me for bloods and a scan of the knee and ankle, they both came back clear from suspected Arthritis. I was then forwarded to the Rheumatology clinic for further testing as my GP felt this was the next best option for me. I had Bloods & Chest xray done by them and then waited 3weeks for results which i was put on a course of steroids in the mean time to help ease my swelling and pain. These did nothing and if anything i got worse over the 3weeks waiting to be seen.I have severe pain in both of my knees , lower legs and ankles. When i went back i was convinced there was nothing wrong as they said they would call if anything serious popped up, both of my tests came back positive. There are Large lymph noids found and the bloods tested positive for Sarcoidosis. I am back again in May for a check up, i am awaiting CT of my lungs and a camera down my nose/throat before im back in May hopefully. I was put back on to Anti-inflammatries for 7weeks 120g Arcoxia 1week 90g Arcoxia 6weeks. My syptoms are still the same and some days are alot worse than others yesterday and today i am bed bound with pain and shooting pains when i walk.Swelling has gone thank god but the pain remains and does show any signs of easimng or leaving me. I can not sleep properly, i have sweats through the night, burning up. This week i have noticed blurred vison alot and even as i write this i have it but i also get this when i have Mirgraines so not sure its completely related to this.

I appreciate any support on this as it so difficult specially as it is my legs and i am a Hairdresser, which i left to go back to college to become a makeup artist. Im near the end of my course but im finding it difficult to continue with the pain and except the harse reality that i wont be able to get straight back into work when i finish the course. 

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  • Posted

    Hi Ruby

    With Sarcoid the body believes it is under attack and makes extra white blood cells to combat the invasion of germs etc.

    These white cells are so numerous they form clusters called granulomas. These clusters of granulomas often amass in your joints. The bigger the joint the more granulomas will amass. Knees hips are common place areas to have this problem.

    Xrays show normal joint spacings thus reports will say that nothing was found to cause the joint pain. The granuloma are not picked up in the Xrays of joints.

    Steroids help in the management of this issue...but steroids come with a host of issues for the user.

    Eye issues are also common you need to see an eye specialist urgently as you may be suffering from Uveitus do not leave this to May as it is most urgent.

    Night sweats are also common along with poor sleeping quality.

    CT and camera are esential to provide a comprehensive study of your personal condition, your doctors are doing a good job.

    Regards

    Tangles

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    • Posted

      Hi Tangles,

      Thank you for your information i really appreciate it. 

      When the results came back from the chest xrays it show the Granulomas on my lungs but there was no mention of them being anywhere else, just that my sore joints is a side effect from the Sarcoidosis. Maybe im just not understanding them correctly. 

      Do you think they should be investigating my knee joints more or is the test that there going to provide enough to determine everything? The doctor i seen made clear to me that i had Acute Sarcoidosis and i will get better that it could be worse by having Rheumatoid Arthritis.. but i feel like im having no changes in my symptoms. Steroids didnt work so came off them and went back to Anti-inflammatries which i am now on until i return in May. I feel like im going backwards instead of forwards some days.

      Also the Uveitus you mentioned is this serious? Unfortunately my GP isnt available until next week to check with her.

      Regards

      ​Ruby

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    • Posted

      Hi Ruby

      Next week with your GP for referral to eye specialist will be fine.

      Acute Sarcoid is good!

      With acute the issues are usually resolved quickly. It is chronic suffers who have the long haul.

      Sore joints will come from granuloma but the mass is small compared to the mass in your lungs. X-rays etc will not show them up but rest assured they are there and causing you considerable is comfort.

      Anti inflammatory should only be taken in the short term. They cause the stomach lining issues which will start a lot of other problems. Suggest a maximum of six months at any time. Also ask your doctor for meds to protect your stomach whilst on anti inflammatory.

      Recommend light exercise for the knees. Short walks not long walks but do them often.

      Regards

      Tangles

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    • Posted

      Hi again Ruby

      Following is a post I did else where, I thought it might be of some value to you also. 

      Blood tests are marvelous things, they can tell all sorts of interesting info on what is happening to your body.

      But, they are only as good as the questions the doctor is asking the laboratory to investigate. Also, only as good as the person reading the report and taking action where needed.

      Following tests should give definitive answers.

      With bloods for Sarcoid always ask to have included;

      ACE levels which indicate the level of current activity of the sarcoid.

      Full liver function (LFT) a comprehensive review of what the liver is doing.

      Feritin Serum level which will show if there are inflammation issues in the body, if the levels are high you will be fighting inflammation.

      B12 iron levels will indicate if there is internal bleeding.

      Anything else your doctor feels is necessary. 

      Lung biopsy by scope.

      X-rays and CT

      Ultrasound abdomen including accurate measurements of the liver, gal bladder, kidneys and spleen, again whatever else the doctor wishes to include.

      Laboratory tests of lung function including lung volume and gas exchange capabilities

      If the doctor does not ask the right questions you will not get reports on important information on how your body situation is.

      A combination of these will determine if sarcoid is present and the extent of the condition. A path forward usually includes steroids.

      Ask, no insist on copies of all above reports. It is your body and you have the right to this info.

      Reading the reports gives you a better idea of what is going on with your health. Often these reports will show other issues with your body not related to sarcoid. Often these issues are over look by your doctor as they are only interested in sarcoid, not wishing to get caught up in other problems. Discussing these reports with your GP often takes away some of the mystery involved in interpreting these reports.

       Tangles

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    • Posted

      Thank you for both posts.. the underneath post is quite an interesting read!

      So i believe it is a good sign that its Acute, i suppose it doesnt feel like that at the moment although i am grateful that it wil resolve.

      Im on the Anti-inflammatorys for 7 weeks until my next visit iv had no issues so far with my stomach but i will mention it to my GP.. They dont seem to be doing anything for the pain, iv purchased some strong knee support straps to see will this help in walking as im finding it very difficult at the moment. Im still trying to keep myself as active as i can..

      Thank you again for your helpful advice

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  • Posted

    Hi. Ruby.

    I'm really sorry to hear about the pain you're going through. I just don't understand why no medication has worked so far to alleviate your pain. This must be really hard, frightening and frustrating. I remember how painful my joints/body/ankles were the first time this curse (sarc) hit me. I was in bed (couch) for 3 weeks until I discovered that Advil could help greatly. Thankfully, my pain gradually got less and less intense but it kind of turned into more of a burning sensation all over but that too almost completely went away. So your pain never got any better since Nov. ?  Cant they find anything that will help with your pain? Was Advil one of the anti inflammatory meds you tried? It kills me to hear about people suffering but I'm powerless. It sucks that this illness isn't getting the attention it should.

    I just started taking Tumeric pills and I also use ginger on a daily basis now. They're supposed to be natural anti inflammotories.

    As for the double vision, I'm not sure but it could be because of your headache. I know many years ago a so-called "specialist" told me he thought I had MS, immediately after that I started having severe eye pain and I thought my vision was kind of blurry all of a sudden. Then MRI showed I had no MS. The eye pain disappeared and so did the blurriness. Now with this new diagnosis of sarc, sometimes I feel some mild eye pain. What I'm trying to say is that the mind can play games on us and make us see things that aren't there. I just hope and pray you dont have anything wrong with your eyes. I also hope they find something that will help with your illness and pains and hope soon enough you'll be able to go back to work.

    I wish you the best of luck.

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    • Posted

      Hi Thesufferer,

      Thank you for you comment.

      Advil was the first Anti-inflammatory i was put on by my GP in late Nov. Start of Dec. On my first visit And it did nothing for me, when i returned to her in the New year she put me on Arcoxia 90mg and i continued to take these while i waited on my app. In the hospital rheumatology clinic.. which was at the end of March in that space the swelling came down (end of Feb.) and i felt like i was more mobile still stiff with some pain especialy after long days.. after my appointment in March with the hospital i was put on a 3week course of Steroids untill my next visit which was just over 1week ago with the hospital, this is when i got diagnosed with the Acute sarc. The doctor i seen wasnt the same doctor i seen on my last vist, he wasnt going to give me any type of pain relieve said "its acute its self curing wheather i give you anything or not it wont make a difference". Also did not mention any other tests except a CT which had already been requested by the previous Doctor as she had received my results the day befor my due app. Luckly to my advantage the Doc. I seen before was available for a second opinion and also requested a camera down my nose/throat and bloods a week befor my app. And put me on the Arcoxia 120g 1week and 90g 6week.. Unfortunately i just feel awful worse since then although i do feel it could be down to me over doing it this week aswell as i had alot of walking and standing as i am in the middle of finishing my college exams in Makeup i was standing in the one spot for 3hrs on top of excessive walking..

      I do feel the eyes might be down to Migraine as i do suffer just havent had one in a long time but as im not sleeping properly i feel this could be the cause.

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  • Posted

    You're welcome, Ruby.

    I'm really feel for you. It really sucks that nothing seems to be working for your pain. I can only imagine. For me Advil was good help. I still hope they'll figure something out to help you but yeah I think physical activity might make the pain worse but I'm not sure. I remember a couple of months into my illness my muscles would feel like they're burning up every time I tried to exercise.

    The one good thing is that they think your case is "acute" and will resolve on its own, which I really hope is the case. I'm just wondering how they came to the conclusion it was acute.

    Can you see other doctors to see if they can think of some kind of other pain meds?

    I hope you'll get better and the pain will eventually go away and again I hope your eyes are fine and it's only due to the migrane.

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  • Posted

    Ruby

    Acute is determinded when the symptoms come on suddenly, compared to those who have been there for years but not bad enough to do anything about them.

    Tangles

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