Has anybody had a steroid injection that works on whole body that hasn't had a definite diagnosis?

[shezaroo123]

In so much pain right now movement is agony, I was trialled on prednislone 30mg for first week and then 15mg for 10 weeks, which were fantastic pain wise, however got told to stop them and now one doctor at the surgery has told me that I won't be able to get prescribed them again because I haven't been officially diagnosed with an inflammatory problem she was really quite horrible to me is there any other way I can get one of these steroid injections without going through this GP?

[Hidden]

Hi shezaroo,

I am sorry you are having a horrible time right now. In answer to your question I have only ever had IM, intra muscular or IV intravenous steroids. And yes they are for the whole body as I have RA and it affects every single joint of mine. These have only ever been prescribed by my rheumatology team and the IV has worked every single time giving me relief for about 6 weeks.

All I can suggest is you go to another GP and discuss them them. I know I have only one GP I prefer to see within the practice and there is nothing wrong with asking to see the same consultant. Also have you been referred to the hospital specialist yet? If not start asking tone referred for a diagnosis if nothing else then you will know what you are dealing with

Good luck

[kizzy12]

i agree with above post ...i had to go through every doctor in my surgery before i found one who would listen and do something to help...dont give up x

[shezaroo123 in reply to kizzy12]

Thank you Kizzy I do have one constant doctor that I see but she says its down to the specialists she was hoping that they would provide proper treatment with steroids working and bone scan but says there is nothing she can do and the GP that deals with giving steroid injections was the horrible GP! Think I might have to try a different practice altogether. x

[shezaroo123]

Hi Poppy thank you for answering, I saw a Rheumatologist as the doctor that prescribed steroids said he believed I had sero negative RA and not fibromyalgia as the steroids wouldn't have worked on that. Got sent for bone scan which I had 2 weeks after stopping steroids and the only slight pain I was in was with back. Bone scan showed severe inflammation in both sides of lower back and mild in wrists rheumatologist didn't even look at report so GP sent me to another one who ordered an mri on back that as far as I know came back clear and he won't even see me again. And every day is slightly getting worse and worse pain wise and I know the only thing that gets rid of it completely is steroids. I am going to call the NRAS helpline on Monday and hopefully they will be able to tell me what I can do.

[mattcass in reply to shezaroo123]

Hi shezaroo, I know what you are going through check ups and Xrays don't always show up what you is happening to you at the time, The next time you go back to the GP you will be in the position to tell him what you need and what you require to make things easier for you just by the advice and support you get by being on this page. But do not take anything medication until you see your GP. Mattcass

[shezaroo123 in reply to mattcass]

Thank you Matt all help/ advice is greatly appreciated, unfortunately think I am going to have to change GP as as much as she is nice she won't push for anything to be done for me and just says its down to specialists. And they don't know what it is like trying to get through each day when every movement causes you severe pain to the point of needing help to dress and hygiene and the constant fatigue that leaves you unable to do anything and have no quality of life anymore. Sorry for the little moan! Thanks again for your advice.

[earthwitch]

I was in the same position for quite a while. My GP would only give me either one injection or one two week course of steroids every three months. The only time I had longer than that was when it was recommended by a rheumatologist that I take steroids for four months in total to "prove" that it was inflammatory, but my GP wouldn't have done such a long course without the rheumatologist ordering it. In that case, the intention was that I started taking DMARDs after the first month, when rheumie was sure that it was inflammatory (if I responded well to steroids), then I would have another three months of tapering dose of steroids while the DMARDs kicked in. For various reasons (including the fact that I have now been diagnosed with ankylosing spondylitis, for which DMARDs don't really work well), that plan didn't happen quite like that.

From the sounds of the tests you had done (bone scan and MRI), and the bone scan showing up inflammatory stuff in your lower back, it sounds like they were strongly considering spondyloarthritis rather than RA. See if you can get your GP to refer you to an ankylosing spondylitis clinic for a second opinion. Its a bit useless seeing ordinary rheumatologists if there is any doubt - you need to see one who has a special interest in spondyloarthritis. Spondy is a whole lot harder to diagnose than RA in a lot of folk - mainly because the classic signs only show up after years of damage, and there are no hard and fast blood tests for it (though a lot of people are positive for the HLA B27 genetic marker).

If you can take NSAIDs without them affecting your stomach badly, then that is actually the first line treatment for spondyloarthritis. You could ask your GP to prescribe them for you at full strength (which is more than the over the counter dose). If it is spondy, then its quite likely that you would get just about the same kind of relief from NSAIDs as you do from steroids, without the risk of them mucking up your adrenal function or causing osteoporosis (which steroids will do).

[shezaroo123]

Thank you earthwitch, I could do with seeing that rheumatologist who wanted to put you on them for 4 months to prove it was inflammatory are you able to give me a name? Well I was on them for virtually 3 months and all the places I get the debilitating pain I did not have the whole time I was on steroids it was only when I stopped that pain is gradually coming back again. I have had many NSAIDs over the years and they do not provide any relief for me at all now and I have had previous internal bleeding so as soon as I take anything like that it plays havoc with my stomach even when I take omeprazole with it. No I did not like taking steroids because of all the side effects and they seemed to make the fatigue worse but ultimately in 12 years that has been the only fully effective medication that I have had for the pain.

[earthwitch in reply to shezaroo123]

I had to go private for that, shezaroo. I think your biggest hope is if you can get a second opinion from a spondyloarthritis (ankylosing spondylitis) specialist. Really insist that your GP takes into account how good you felt on steroids, and say that if it isn't RA, then it must be one of the other kinds of inflammatory arthritis.

[shezaroo123 in reply to earthwitch]

Thanks again earthwitch I am quite prepared to go private but don't want to end up with one like I have seen on NHS! Being told on NHS that steroids lift your mood and that's why I felt better is one thing but paying hundreds of pounds just to be patronised and made to feel its all in your head is quite another I think that really would push me over the edge! I will try see doctor a.s.a.p. and ask about seeing one of those specialists.

[lorann]

12 years seems like a terribly long time to still not be settled in Diagnosis and treatment! If I were you, I would start all over with a new Rheumatologist/New Clinic, etc

I hope you can find the right ones soon xxx

[shezaroo123]

Hello thanks lorann, When my knee first went got told I had fluid on the knee, so when the other knee went assumed that was what was wrong with that one too then shoulders went and as pain would be present for months and then disappear for a while I just assumed it was this fluid thing and got referred for physio which I have had many times over the years and then 3 and half years ago it hit my whole back/neck, thumbs/ fingers, big toes, feet, and hips and now starting in wrists and elbows. The last one was a completely new clinic and he told me he doesn't think they will ever find out what is wrong with me and although bone scan showed severe inflammation in lower back the mri that he ordered didn't so he won't even see me again. X