Can anyone help? I have suffered for over 20 years from an autoimmune problem initially told it was due to my liver readings being on an alcoholic level, the test showed it could have been Lupus but wasn't tested for it until last year when my body broke down.
I spent most of 2013/14 very ill resulting in hospital admissions. I have SLE Lupus, Fibromyalgia, arthritis, eye problems due to the Lupus and suffered with severe kidney problems. I have 3 prolapsed discs and one beginning to disintegrate.
I weaned myself off the steroids as the weight was affecting my back.
For the last 6 months my skin has progressively itched and now I am getting nerve pains 24/7 so I am lucky if I sleep 3 hours and only then when I am so exhausted. I have been finally prescribed Pregablin at 25mg per day which does nothing and have upped it to 75mg but still I cannot stop the nerve pain. Now my limbs are weak and I am exhausted.
My GP is not interested, she is not happy that I asked for a change of specialist as the one I am supposed to see rarely sees me, she only gave me a 'proper' meeting when my husband pains for a private session with her, now that I have lost my job due to the illness I cannot afford to pay for another. I asked to see one of the previous ones who was excellent. This specialist was rude to me and patronising in front of my daughter as she said Lupus sufferers do not get itching skin! My GP is not happy that I have asked for another previous specialist to continue my treatment, she does not know that one of the hospital organisers told me they were in meetings about my choice to change. My GP now says everything is due to the Fibro and when I told her that in my Lupus group others have itching skin she told me I was wrong and not to listen to other people or go online. What can I do? I can't live with this itching and nerve pains.
I am having back injections in a week's time so maybe this will help. I feel like I am on my own in this.
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Iona467
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Hi, I have posted this question on our facebook page and am also going to send it to our nurseonline service on our website to see what she advises. I'll post any responses here. I have to say I think you've been treated appallingly by the medical professionals so far and your GP needs to check her facts!
Oh thank you so much! I now don't want to see my GP as she gets very agitated if I suggest treatment due to my symptoms or give a suggestion as to what is wrong. She doesn't want to give my anything said it is down to the specialist, but this is what the specialist says also, see your GP!
I am only trying to sell you hope here. I could hardly believe what I was hearing when I watched the video below. No one ever believes that supplements can do so much. People think that if a doctor doesn't prescribe it, then it couldn't possibly work.
My OH has been buying me Triple Omega 3,6,9 tablets and this has really helped me too, as I was bed bound and unable to walk properly before. We also gave some to a friend with Leukeamia and her skin is now a normal shade instead of red, I think they are a magic potion!
Yes, this video did give me hope but I am sorry for the poor girl going through it!
I've now had some replies from patients:
1. I had severe itching a couple of months ago, and was told it was due to a serious liver problem. It turned out that I had a blockage in my bile duct and had gall stones. Maybe get your gall bladder checked out. I get mine taken out next week!. Its full of stones. It might help you
2. Maybe a neurologists opinion on your nerve pain would be helpful - maybe change your gp for one who understands the importance of continuity of care.
3. I have had severe itching of my facial/neck skin. The only thing I have found that helps, and it really does help, is Body Shop Aloe Vera facial cleansing foam. I have also used their aloe Vera night cream and my mother has also used the Aloe Vera Soothing Gel. Worth a try. It's the only thing that has never irritated my skin.
Doubtless there will be more which I will also post here. If you want to view responses directly our facebook page is: facebook.com/StThomasLupusT...
Thanks, I wondered if it was due to my liver as had a biopsy some years ago due to the readings. Will ask about my gall bladder. My GP said there is no treatment for the itching so not sure she will listen to me. I would so like to see a specialist for the nerve pain as I am now getting desperate.
I've tried Aloe Vera but I think my problem is internal as I have always been careful with my skin and don't use anything perfumed and use oils a lot, my bath is full of oils and I use creams all the time. Nothing works wants I have the nerve pain.
I've left a comment on the FB/St Thomas Lupus page. There is a lot going on with you and you are correct in saying it needs sorting out. Push for what you want. Don't be discouraged by your GP. Please see my reply on FB.
Here are a few more replies:
1. My lupus began with itching and all my other numerous symptoms started later. I saw a dermatologist first who sees me at the same hospital as my rheumatologist so everyone is in the loop.
She prescribed amitriptylibe/Gabapentin for pain, fexofenadine and Zantac for itching and finally hydroxychloroquine with methotrexate stops the overall problem and manages my joints reasonably well.
The eyes and mouth etc have localised prescriptions as needed.
Hope this helps. Good luck xx
2. I've had Lupus for 22 years and I started with an itchy hive-like rash over my body, the Lupus facial rash came later, then all the joints in my body and my kidneys were affected. I am not surprised at your GP to be honest, my first Rheumatologist diagnosed Psoriatic Arthritis! I've never had Psoriaisis in my life. Fortunately, I was referred to St Thomas Lupus Clinic, and got sorted. Push, push, push until you get what you want, it's serious, your life is at stake and I'm not being over dramatic
3. I have started getting itching on skin, temp high throughput night but feel cold in day I have lupus and raynauds on steroids which Dr's want to decrease, about to start on plaquenel.
4. We DO SO get itching skin. I was diagnosed in 1982. Years of experiencing itching that wakes me in my sleep, drives me crazy. I have been given Amitriptyline for the nerve pain. Low dose helps a lot. See a different GP/ Rheumatologist. Email the on-line Lupus Nurse at St Thomas' Lupus Trust for support and general advice. Xx
5. I have been taking Amitripyline but now my GP has stopped it as she said it was to help me sleep which it doesn't!. I did email the Nurse on the St Thomas site and mentioned the recommendation to my GP, she was furious and said I was not to self diagnose or listen to others in my Lupus group! Was shocked and she ignored my suggestions, i.e. the itchy cannot be treated. So what do I do?
Thanks for all the help, honestly I am so shocked at my GP's attitude. She seems to be fighting me all the time and I am so ill.
Here's the reponse from our nurseonline service on our website:
I am so sorry that you are having such poor support from the medical profession. They do not appear to be
listening to you at all. Do you not have a specialist nurse in your Rheumatology Department that you can talk to?
They can be very helpful and supportive.
Firstly, if you are taking medication you must make sure that none of these can cause skin reactions.
You do not tell me what medication you are currently taking. A side-effect of Hydroxychloroquine
can occasionally be skin rashes and itching.
Secondly, lupus patients do tend to be “allergic” and this can be to certain foods and drink, not forgetting
insect bites and certain chemicals.
Thirdly, you could be having a ‘flare’ of your disease. Skin sensitivity is not uncommon in lupus and can often
indicate that the disease is active.
Itching can also be a symptom of both kidney and liver disease.
Another cause of intense itching can be due to menopause.
‘Dry skin’ can also result in dermatitis and itching.
Antihistamines are useful in reducing skin irritation and they can also help as a mild sedative. E45 Anti-Itch cream can also be soothing.
As you are having severe skin problems, you could ask your GP if they would be willing to refer you to a dermatologist for their opinion. You could try to see a different GP in your practice who would be more understanding.
Hi, I have now seen a dermatologist who gave me some cream but it is not working very well, the itching is just awful and I feel like I am going mad. I have been allergic to my meds so now I am on Methotrexate as I was having fevers with Hydroxychloroquine. I think you are right about the flare ups as they are happening monthly. My liver is still showing too high readings but my GP seems to think this is 'normal' for me. I don't have a nurse to talk to and I am not supposed to see any of the other GP's, when I do, they won't even go through my blood tests and refer my back to my GP. It is odd that I get told my results are high (abnormal) yet my GP keeps saying they are 'normal' for me.
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