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Hi,

I have been diagnosed with a Connective Tissue Disease which is likely to be Lupus but no definite diagnosis of Lupus. This was several years ago. Since then I have been struggling to cope with the condition with many flare ups and have been on Long Term Disability from work for 8 months now. I see my consultant regularly due to the condition not being under control.

I am becoming increasingly concerned about the effect this is having on my arms and legs. I have constant tingling and pain in my arms from the elbows down to my fingertips and from my ankles to toes. This is more severe in the night and first thing in the morning and they can also be numb first thing. I seem to be losing the ability to grip and struggle to write much at all or open jars or even fill my car with fuel. My joints have been swollen and painful off and on over the years however, my knee and ankle on the right side are now swollen most of the time if I try and walk any distance. My consultant gave me a steroid injection in my knee last week as he could see how bad it was.

I am on 8mg Prednisolone, 200mg Plaquenil x 2 per day, Adcal-D3 x 2 per day, Co-codamol for pain relief x 8 per day. I have tried Amitriptyline to help at night but this did not agree with me so longer take it.

I just wondered if anyone has experienced similar symptoms and how bad can it get.

Jacqui :)
 

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Hello Jacqui
I am concerned that your lupus is not being adequately treated. There are medicines like Methotrexate or azathioprine( Imuran) that could help and also help reduce the Prednisone.
When did you last have a thorough check up, physical and bloods, and has there been no attempt at a complete re-evaluation ? A steroid injection seems a poor response to what you are going through and the effect it is having on your life and work. I have no experience of this sort of symptom, but I wonder if you have ever been tested for APS, a blood clotting condition? Maybe you need to see a neurologist and have special muscle testing. If these symptoms are newish since diagnosis and worsening you definitely need additional investigation. Maybe there's another disease element starting, something like myositis that affects the muscles

I do know there is a specialist CTD clinic in Glasgow if you can get referred there
All the best and hugs
Clare
 

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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 :)
 

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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!
 

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Hi jacqui - 8 months is a long time to suffer without any improvment. I would start to get very vocal with my physician about this - it is now becoming a quality of life issue for you.

I too have numbness and tingling in my extremeties. My physicians blamed it on my sedentary lifestyle (not by choice!) and anxiety.

I recently saw a new neurologist, who did an EMG conduction study. Small electrical "shocks" are passed through different parts of the legs and arms via tiny needles, and the electrical current studied. I was diagnosed with peripherial neuropathy following the study. Finally I don't feel nuts.

I have been put on Lyrica for the pain, which is helping quite a bit. It does not go away completly, but it is tollerable.

Please see if your physician can refer you to a neurologist to locate the exact cause of the numbness and tingling. It is not a normal part of this disease process, and should be investigated by a specialist.

Hope you get feeling better soon! :p
 

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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
 

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Hi Jacqui,
I'm, with the others in feeling you are inadequately treated.
'Bloods not too bad' is no reason to discount your very real physical symptoms.
If you are failing to reduce your steroids then I would think that is the time to consider the imunosuppresants that have been mentioned. This is the plan my rheumy has for me if my current pred taper fails. It is, I believe, the modern way to treat the disease.
Things sound miserable for you at the moment.
Does your rheumy have a lot of experience in connective tissue disorders. Some don't........however much you pay for them:worried:

Best of luck
 

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Hi Jacqui,

I am sorry to hear you are doing so poorly. I agree with Katherine. You need to really stress the pain you are in and how it has altered you life. If this doctor won't help you then you should seek out another that will.

It does sound like you need a referral to see a neurologist. The EMG will give the doctor a clearer picture of what is going on. In my case it provided another piece to the puzzle that helped lead to a diagnosis.

Take care,
Lazylegs
 

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Discussion Starter #9
Thanks to everyone for replying. Your responses have given me the strength to prepare to challenge both my GP and consultant on this, as I know my quality of life is very poor at the moment. The thought of it continuing like this doesn't bear thinking about. I did try and approach the subject of a second opinion and whether the treatment I was on was sufficient last year but I wasn't strong enough. I know I really need to be clearer on how much pain I am in and the effect this is having on me, even taking work aside.

Clare, I am really interested in the CTD clinic in Glasgow you mentioned. Do you or anyone else have any more details of this e.g. where it is and the name(s) of the consultants? I am in Edinburgh so getting through to Glasgow would not be a problem.

Thanks for all your support and help everyone.

Jacqui :)
 

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Hi Jacqui,

I've replied to your PM re the CTD clinic in glasgow.

Hugz,

Pam xxx
 

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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 :)
 

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:fingers: That's great that you are finding a resolution! So sorry it took so much energy and time on your part. Another frustion when you have lupus - waiting for the endless specialists, in hopes one of them can get you in some control of your disease.

You did not mention if you have sought a refferral to a neurologist or not. When you see your GP for the CTD specialist refferral (I'm going to guess it will be a rheumatologist), please please mention your neurological symptoms as well.

:eek:hdear: The numbness and tingling are not a normal part of lupus or UCTD unless your disease is affecting your nervous system. There may be another disease process going on, and it should be sorted out sooner rather than later.

Keep posting and let us know how you get on!
 

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Jacqui,
I am sorry it sounds like you are in a lot of pain. I have swelling all the time in my legs, ankles, hands, fingers, and joints. My doctor has put me on a fluid pill that helps some but still isn't under control. I get the tingling and pins and needles in my limbs also. I have not found anyway to keep it from happening or to slow it down at this point. You asked if it gets worse, had to answer. Each person is very different and things going on with each of us is very different. Mine I believe got worse from not being treated for my lupus for 13 months. I am now able to get my meds again and am hoping that will help, but if not then I will be going to the doctor a lot for help.

Not sure any of this helped you but was glad to read your story.
 

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Hi Jacqui,

Sounds very positive so far :yes: :thumbs: well done!! I hope things move along quickly from here. Good luck :foryou:

love
Lily
 
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