Sticky Blood-Hughes Syndrome Support
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SHINGLES and APS

I recently was diagnosed with Shingles , I have lupus etc. I was started on some medication for it which I had to take for 7 days 5 tabs a day. I finished the course, I have some spots left, but it is the pain I am getting like nerve pain on my stomach and other places. Can anyone suggest what could help it, I have been taking Ibuprofen , but I wonder if anyone had any suggestion to help with the nerve pain.

Thanks

Donna

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You may possibly need to see you GP to get something stronger. My sister has had this for some time and takes Lyrica (Pregabalin) to help. I had this med early on my road to diagnosis but didn't work for me.

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Do you have APS? If so are you on any Anti-coagulent? Warfarin etc?

I was told Ibuprofen shouldn't be taken with Anti-coagulent, certainly not warfarin.

I find Paracetamol always seems to work really well when you really need it (non-headache pain).

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Hi teadonna,

I am sorry to hear that as I know it can be very painful. You know we are no Doctors on here only know our own illness rather well.

I wonder if your Specialist for HS/APS and Lupus diagnosed you for it? I also wonder if you have got Sjögrens syndrome?

Best wishes from Kerstin in Stockholm

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As to Lyrica that a Neurologist tried on me several years ago when I was not on Warfarin (not for Shingles but for APS probably) and it did not work at all. Like it did not work for Ozchick either.

Kerstin

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Didn’t work for me either! X

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HI, I think over time the pain will die down, but this of course does not help with how much it is currently helping. Whatever medication is prescribed, be careful regarding your INR when adding anything new in, and do check with your main specialist. MaryF

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thanks for all your suggestions, I take Ibuprofen but also take omeoprazole to coat stomach as they did not want to put me on it, but was the only thing I could take for the arthritis in my knees and also degentive knee joint, which I have now have total knee replacement in both knees.

I was put on Pregabalin previously years ago but this disagreed with me. I know there are only certain things I cant take due to being on the warfarin. I think its something for the nerve pain I am on amitriptyline but this if for the Migraine headaches.

I am due to see my Neurologist on Friday, I wonder if it worth mentioning to him about this and see if he has any suggestion.

once again thanks

Donna

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I am sorry to read you have shingles. There is a vaccine and anyone with SLE and who are immunocompromised should see a doctor.

IMHO, you need to see your doctor who will prescribe specific medication for neurological pain. I am frankly surprised you have been left to your own devices.

Donna, when you see the neurologist then you must ask him for a prescription.

May I also ask whether you are seeing a lupus rheumatologist specialist for SLE?

With good wishes,

Ros

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Hi Ros. I did see my own doctor who gave me tablets to take etc. For a week. I am under Prof D'Cruz at Guys hospital. Not due to see him till next year as saw him in August. I will mention this to my neurologist who am seeing Friday and see if he can give me anything I have tried Gabapentin and pregabelin which I had side effects.

Thanks

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I have several relatives and friends who have had shingles and in all cases it has taken a long time for the nerve pain to go or even reduce in strength. My mother also suffered nerve pain every time she had a flare up of her RA. Even wearing loose clothing was agony.

Pregabelin and Gabapentin does not work for everyone, for some the side effects outweigh the benefits. I can only suggest you seek the advice of your GP and perhaps ask for a referral to a Pain Management Clinic.

I hope your pain lessens very soon.

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I have APS, but had shingles before I was diagnosed, I unfortunately had the rash on the back of my neck, and now have nerve pain down my face and have tinnitus permanently. I used to be a medical rep before my illness and 1st drug I ever promoted was for shingles, it’s very difficult to treat shingles if not caught in time, usually by the time the rash is noticed it’s too late, you need to take medication within 48 hrs for it to have any chance of working, so the pain you have is nerve pain and neuropathic, and you now have it for the long haul, sorry to be the bearer of bad news, the pain you have is permanent and can only be helped with pain medication, some will work some may not. I was given gabapentin and not pregaba and this works for me, it dulls the pain but doesn’t completely quieten the noise of pain or the tinnitus, I have had CBT (Cognitive Behavioural Therapy) and the techniques I’ve learnt help a bit, but sleeping is an issue for me as the tinnitus is noisy it’s like a firework display going off in my head so get help because it’s easy for depression to creep up on you. I hope this info helps you, also be aware that shingles can come back and flare up as it did with me, luckily I got it in the same place so noticed it due to the pain flare up, this all happened to me 7 years ago, so it’s for the long haul I’m afraid, but you will find something that works for you I’m sure😇

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It is interesting information about shingles and Hughes and raises some questions for me. First of all I was a bit of an odd kid way back when because I didn't really get sick like the other members of my family. The flu and colds, that type of thing, did not happen to me all that much. My siblings would get ill and be off of school for several days but I would be sick for a few hours. I mean I would get the flu and stuff but it was either very short lived. I had my tonsils out at 9 months, mumps on one side only, shingles almost all the way around my waste age 9, and Hepatitis A (I think) age 13, and so on. My acute arthritis started at the age of 28, all of these things makes me wonder if it is my immune system that has turned against me at this older age. Could this have always been a part of Hughes? Were these signs? Or am I just looking at this thing all wrong?

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