Tingling in Joints & Limbs

Hi Clare,

Thank you for responding. I too have been concerned re my treatment. I thought I was fortunate to have private health through my job and I have been seeing my consultant privately more or less all the time since this started. Although he is very nice, he is a man of few words so really doesn't say very much when I tell him all my symptoms. He had mentioned a few months ago of trying different medication but after the blood results he said things were not bad enough to put me on this other medication as the side effects included cancer. Not sure what the med was.

He has also been very keen to get me off the steroids however each time he has tried I have become very unwell and the result has been the steroids have had to be increased to an even higher level just to get me back on my feet. He now seems to be indicating that I may need to stay on the steroids after all.

I have been on 8mg for some time now after being up at 15mg last summer. My bloods were done about 8 weeks ago and I am due to see my consultant again the 2nd week in February. I don't feel the steroid injection has done much for me. My energy levels are through the floor today and I'm feeling a bit sorry for myself. I have a 3 year old daughter and I get so frustrated that I don't feel well enough to give her the attention that she deserves.

Anyway enough rambling - just having an off day!

Jacqui

Dear Jacqui,

Hi! I feel for you...especially having a 3 year old to handle on top of all your pains.

I was diagnosed with Lupus almost 2 yrs ago and am awaiting results that might indicate Mixed Connective Tissue disease. I, too, have many of the symptoms you described, though generally my swelling is almost gone about 1/2 hr after awakening in the am (unless I having a really bad day). My hand/arm symptoms prompted my rheum. to refer me to a physiatrist who ran nerve conduction tests on me and confirmed carpal tunnel syndrome (I'm not surprised given all the inflammation). Sent to physical therapy, which really didn't do much other than irritate my nerves in my arms (ugh). Anyway, now I am on my first cocktail of prednisone + methotrexate. It has only been 2 weeks and I have not seen/felt consistent relief yet, but I need to give it more time.

Please, if you can, get to a doctor with more experience in this area and who communicates better (if you are in the UK, I have no idea how this might work or how fast). I think there is a role for cortisone, but I have been told by more than one doctor that repeated shots can deteriorate tissue/muscle in that area (like we need more of that!!!). I also resisted this because my symptoms come and go quickly, which means the shot would not really be doing me any good (though it might be different for you as you have ongoing swelling).

I hope you get some relief soon--and try to take it easy today. Somedays you just have to get through the basic requirements and put everything else aside. Hang in there!

Hi Jacqui

I too would be worried that you are not recieving adequate treatment. If my rheumy were to treat me solely in accordance with my blood test results I would be in agony and completely unable to function at any level.

I would want to be sure that both APS and peripheral neuropathy were looked into. Your symptoms sound very familiar to mine and I do see a neurologist as well for relatively severe peripheral neuropathy. Thankfully mine remains very stable and just needs monitoring mainly.

There are also other reasons that this could be happening. Again, i think that seeing a good neurologist would be a good place to start.

I am very surprised that your consultant didn't want to start you on that "other" drug due to cancer possibilities as, although there is a very slightly raised risk of cancer with some immunosuppressant drugs, the risks are widely considered to be much lower than those of staying on prednisolone for any length of time and also far lower than inadequately treating your condition. Those drugs are in fact referred to as "steroid sparing" drugs for precisely that reason.

Another thing that is important here is not to adopt the "I'm a brave girl" attitude when seeing docs. If you grin and bear it they think you're doing OK. After all, most of our symptoms are invisible and the consultant (however experienced) can in no way imagine how debilitating such a disease can be unless he or she has experienced it first hand. You might want to try complaining a lot more or perhaps looking into whether a second rheumy opinion might not be worthwhile in addition to seeing a neuro.

Hope that helps a little,
Katharine

Hi, I just wanted to let you all know how I am getting on in my search for a specialist in Connective Tissue Diseases in Scotland. The CTD/Lupus specialist clinics appear mainly to be run through the NHS in Scotland. Interestingly, the doctors who I have been advised of do not do any private consultations. I have been pursuing the NHS leads I had today and I spoke to an incredibly lovely lady who was the doctor's secretary. She has kindly advised me what I need to do to get a referral to see the specialist and she expected that I would have this referral within 4 weeks. So, really positive news and next step is to see my GP on Monday for him to send the referral letter. Hopefully, this will take me a step closer to gaining some control over this illness and improving the quality of life for not just me but my husband and beautiful daughter.

Thanks to you all who have been an inspiration over the last few days and given me the strength to help me pursue this alternative route.

Take care.

Jacqui