LUPUS UK

Lupus & Rheumatoid Arthritis

I have recently been diagnosed as having lupus and rheumatoid arthritis.

I just wondered if anyone has the same symptoms as me.

After many years of having inflammation on various parts of the body I am now having very bad leg pain especially at night as soon as I lie down the pain starts. It started off like shin splints, but then it would be like nerve pain, bone pain, in various parts of the legs and sometimes the groin area. Also sore hands again especially at night.The doctor has now put me on hydroxycholoroquine, methotrexate,folic acid and aspirin. The methotrexate I have only been on for just over three weeks, I think it’s yet to kick in.

During the day I also suffer from pains in the legs and stiffness. I have the Lupus rash.

Would be good to hear from anyone who has similar symptoms....

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Hi Jhpc,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for support and information.

Have you discussed your pain and pain management with your doctor? It is likely that the methotrexate will take a bit longer to kick in. It usually takes about 3 months I believe.

We have a blog article about pain management in lupus which may be of interest. You can read it at lupusuk.org.uk/pain-managem...

If you need more information about lupus and LUPUS UK we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

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Thanks Paul yes it’s only since I’ve been referred to my neurologist that I’m now at last getting somewhere with the diagnosis and treatment, I am to get my bloods taken every 8 weeks then have a follow up appointment to discuss the results. Thanks also for the websites which I’m sure will be useful.

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I have taken methotrexate for 10 years and only recently stopped. It took away some joint inflammation and particularly the red raw scalp I had with serious hair loss. My scalp has never become inflamed like that again but it was too late to save my hair -not the fault of the rheumatologist who actually apologised for his colleague!! My joints did not fully settle until I went on steroids -prednisolone -which I still take but am now trying to reduce. I did have swollen painful hands until took both MTX and pred, and leg and joint pains. It does take some weeks for things to improve, but the prednisolone worked best for me and we are all different. Now I am reducing all meds, my legs are restless at night -just seeing how things go! Hope this helps... all the best with getting sorted, it takes time and is very frustrating at times.

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Sounds as if you’ve had a tough time Florence,I hope things get easier for you. Thanks for your reply.

So once you start taking meds for lupus & Rheumatoid Arthritis are you on meds for life...

I’m finding it very scary with my legs being stiff and sore, don’t get me wrong I can walk about and swim, but get very tired more easily.

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Not for life but whilst you need them and then reduce as the consultant advises. Mine is good like that - have tried before and been ill but this time mostly ok. You have to bear with the process. Lupus is a big nuisance in life but if you ca

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Sfay in charge ratger than illness you will feel better about yourself. Takes quite a long time to get sorted in my experience. Best wishes

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I won’t let it beat me. Though do feel tired quite a lot.

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Yep tiredness comes with it - you will learn to pace yourself

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I am also in the same boat, started in June 2000 with various medicines like MMF, azathioprene, cychophosamide and now on cychlosporine.

Now a days night pain is killing me, trying to manage with out pain killers, beyond my tolerance level taking painkillers to avoid going mad.

Now I am 55, still working. Day time on the job I forget all the pain in previous night. God is kind enough to me to have at least 3 to 4 hrs deep sleep.

Wishing you all the best and a Merry Christmas 🌲

Try to sleep in the early morning hours, hot water bag may give some relief, try to think about the best moments you had in your life, think about good people to distract your mind from the nerve pain.

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I can cope during the day it’s the nights I find it hardest I also take pregabalin for the nerve pain which worked at first but now the pain is waking me up in the night again...hopefully the methotrexate kicks in soon.

Thanks for your response, hope your symptoms ease up.

And a merry Christmas to you.

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Triptomer along with pragbalin is prescribed for neuropathy

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Hi jhpc

So sorry you've been diagnosed with both lupus and RA. Tough to have both conditions although treatment is similar, must have been a shock!.

As Paul rightly said MTX can take up to three months to work and so to tide you over some Eheumy's give steroid injections as there quicker acting!. Alternatively your GP could do a short course of steroid tablets . Just wondering if that could help you?.

IThe groin pain you describe could be your hip joint or it could be nerve pain!. Interesting your going to see a neurologist!. I too have groin pain, tingling and numbness and been thru nerve conduction tests which were negative and have been prescribed Gabapentin !. These tests are done routinely to rule out different conditions. Gabapentin does help with the sensations and pain and is something you could be prescribed as its a nerve painkiller!.

Hope that's helpful and keep us posted how you get on. Hope your better soon as it can all be very painful. X

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Yes it was a shock, however it now makes sense all the different things I’ve had through the years, from inflammation, chronic pain, anxiety, dizziness, bone, nerve pain, hand pain etc.. yes my doctor referred me to the neurologist, most of the people on these posts are going to rheumatologist ......interesting.

I also take pregabalin for the nerve pain which worked in the beginning but now not as effective...the methotrexate should kick in the next few weeks hopefully.

I get more blood tests in January then speak to the neurologist in February...it’s all new to me reading up on lupus very scary if you don’t get treatment.

Thanks so much for your response.

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Hi jhpc

I'm glad you are being kept a close eye on and have important appt's in Jan and Feb!. If your on a low dose of Pregabalin it might be increased in Feb!. I tried it twice and it didn't agree with me. Don't be too worried about what you read about lupus. It's a very individual illness and doesn't mean you ll have exactly the same as what you've read!. Also stick to reputable sources of info like lupus uk who also have very good leaflets on different symptoms. You might be surprised to learn that I have a diagnosis of UCTD which incorporates symptoms of RA and lupus amongst others!. These immune illnesses do come up with the quirky!. I hope MTX helps soon and you have a good Xmas. All the best for those appt's in new year. Let us know how they go. X

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Hi there. Hang on! I have all the pains that you mentioned when I was first diagnosed with lupus nephritis stage IV. But I do not have the rash. In fact, after close to a 2 year cool down period, my lupus seems to be active again recently. Did your doctor tell you how fast the meds will kick in? Because to me three weeks seem a tad bit too long. The doctor may increase the dosage if the pain still do not subside in a months' time.

Just stay positive, and really remove all the stress elements from your life. Based on my experience nothing beats stress in terms of lupus activities. Another major factor would be physical activities, if your activities are extremely intensive and vigorous. But I'd think that stress coupled with no rest would really aggravate it.

Good luck with your treatment, and let us know if there are further developments!

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I can’t seam to get to grip why as soon as I lie down in bed the leg pains start. Looking at other peoples blogs re methotrexate can take up to 3 months to work. So I’m trying

to be patient. I like walking

swimming. Nothing too vigorous.

Thanks for your advice.

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I have both of these and few others called mixed connective tissue.

Joint pain is the worst part especially at night, but my consultant always say if ur in pain in the morning It would be more serious because at night it means you are doing to much during the day your body can’t cope. My hips are always so sore and my shoulders, hands I went for an hospital appointment and he said to get some oil and massage your hands out towards ur fingers meant to help, use tiger bam cream is really good. Could also look into cannabis oils people are raving about.

I’ve been really good the past few years so I have only been on hydroxycholroquine, you really do get used to what you can and can’t do and what works for you. What helps me might not help you, what’s annoying about this, I love my hot water bottle <3 I do take painkillers paracetamol and codeine maybe change the painkillers if they not helping, also look into vitamin D3 we don’t get enough sunlight here for our bones.

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Thanks for the advice I will try the hand cream.

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