SEEN RHEUMY AT LAST

Hi, as promised I will now let you know how I got on at my appointment.

Had thorough examination of feet, knees, hands and shoulders. He asked some questions, mainly about my sarcoidosis, which apparently can cause swelling in the hands. I was not told this by my chest consultant, I have had this condition for more than 2 years and have not been told or read about this. Anyway had feet, hands and shoulders X Ray and then loads of blood tests. Urea and electrolytes, LFT, CRP, BONE PROFILE, LIPIDS, TFT, URIC ACID,RA,FBC, ANF,ACE,DNA,ENA,ANTI CCP AB, CK AND ESR. He told me to up my steroids from 5mg to 10mg per day and that he will see me in 3 months time. I thought this was a long time to wait for another appointment, is this a normal period of time to have to wait?

Sorry it's a long message, but thought I'd let you all know how it went.

Thanks for all your help and kindness in the lead up to today's appointment.

9 Replies

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  • well done . what did he give you ? just more steroids ? will that do any good ? no injections ..

    is your next appointment , just your 2nd time , if thats the case then 3 months is just ridiculous . did he explain why its going to be 3 months and not sooner ?

    i am still waiting for my appointment .

  • Pleased you had the appointment, three months does sound long especially of you are just relying on steriods x

  • Hi both, Thanks for your replies, I hope if the results show anything they will send for me sooner. If I don't hear anything in the new year I will see GP again and see what she has to say. In the meantime I'll just up the steroids and keep taking all my other meds.

    Roll on Xmas lets get drunk hahaha!!!!! I wish.

  • Hiya i was diagnosed by my GP early September, after having problems since the middle of June, I didn't get my first rheumy appointment to confirm diagnoses until 14th November,

    so all i was taking was pain killers and anti inflammatory's until two weeks ago when i started the Methotrexate, The two months i waited to see the Rheumy was long enough, worrying about if this decease could be getting worse, As you now must know that the steroids only mask over the problem, Your blood results shouldn't take that long, I would contact my GP as soon as possible, As she should be able to get your results by just making a telephone call, like mine did, I know she can't start you on your treatment until you see the rheumy, but if the results are positive, she could at least send a email requesting a quicker appointment, Don't let them fog you of.......

    hope you have a sober but merry Christmas like me :) take care shirley x

  • Thanks Shirlthegirl, will contact GP before Christmas and see if they have any results. May have a few snowballs or tia Maria and coke. Merry Christmas to you and every one.

  • I'd be a bit concerned about being left for another three months on increased steroid doses. Steroids can be really nasty if taken too long, and you really do need to be monitored closely so that you can start reducing them again as soon as possible. Three months on even 10 mg a day is really quite a lot. It might be worth seeing if you can discuss this with your GP and get them to contact the rheumatologist and find out why they want you on steroids for that long, and what is going to happen next.

  • Hi Earthwitch,

    I have been on steroids for over 2 years for my sarcoidosis in the lungs, I started on 30mg a day, reducing gradually over the 2 years to a maintenance dose of 5mg, which I have been on for over 6 months. The Rheumy seems to think that the pain and swelling in my feet and hands are due to the sarcoidosis and not RA so until they get my x-ray and blood results to confirm either way he suggests I up my steroids to help with the pain. I will make an appointment to see GP ASAP for her take on this. Thanks for your concern, I will try and get this sorted ASAP .

    Merry Xmas

  • My hubby had sarcoidosis and one of the main problems apart from his breathing was it gave him sore joints. He had steroid treatment for about 9 months to calm down the sarcoidosis, therfore his symptoms and i worked a treat. Maybe the doc wants to calm down the sarcoid flare and then check your joint problem to see if it is RA.

    I feel for you cos sarcoidisis is so similar to ra, the fatigue, the pain, and just the general worry of long term illness. Hubby has recovered so well and has had no falres for a couple of years so he so far is lucky with the treatment. Hope you feel much better very soon and remember to try to rest and stay stress free as it helps the sarcoid. ( he calls it . having the zarcoid!!)

    Hugs Axx

  • Hi Allanah, Thanks for your feed back on sarcoidosis, I was diagnosed in 2010 and shortly after I lost my mother, so the stress was immense and so was the sarc., but since May this year I have been in a lot of pain especially hands, feet, shoulders, hips and back. My lung function test in October was the same as six months previous, but that one was worse than before. I have put a lot of weight on which doesn't help with the joints or my breathing due to the steroids. I also have Fibro , diabetes, dry eyes, asthma, slight showing of emphysema, hiatus hernia, acid reflux, leeo apnea, to name a few. Take loads of meds., by can't tolerate strong pain meds. With Xmas around the corner and a family feud brewing I don't think I will be stress free for sometime. Going to have a few Tia maria and cokes to night, medicinal of course.

    Hope your hubby is as pain free as poss., with his sarcoidosis.

    Merry Xmas

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