Carbimazole / Shingles / Amitriptyline

[PurpleNails]

Been unwell with case of shingles & finishing course of Antiviral.  

Doctor said not related to thyroid / carbimazole.  As Initially was worried it was reaction to new brand of carbimazole.  (Toxic nodule, no autoimmune) 

Have read shingles related to low immunity - should doctor have tested blood count? 

Had vaccines for both Covid & flu last month so may have some connection.  

I’m not due another thyroid function until Jan.  - 1 doctor does FBC at same time - the others don’t.  Latest levels

TSH.                            < 0.01 miu/L                     [0.35 - 4.94]

FT4.                               18.3 pmol/L                    [9 - 19.1] 92.08%

FT3.                               5.7 pmol/L                      [2.4 - 6] 91.67%

GP marks as NFA if FT4 & 3 in range, but frees have been climbing recently.  Highest since diagnosed. - specialist suggested aim for mid range & feel well if FT3 midrange. 

Doctor suggested Amitriptyline for nerve pain.   I know it can be used for migraines & I’ve issues with being stuck on propranolol for migraines.  I asked Doctor if could cause same issue & doctor just said see how I go & can try later if necessary.  

Any thoughts or advice welcome. 

[helvella Administrator]

If you want sympathy and empathy - you've got it. Bucket loads. 🪣🪣🪣

I started with shingles in January. It was deeply unpleasant.

Like you, I was given, an antiviral. And Zapain (co-codamol). Then, like you, offered amitriptyline. Which I initially refused. But I was feel very unwell and not sleeping due to pain. So, eventually I accepted and got to 35 milligrams.

It helped. But, as the weeks went by, I found the side effects of dry mouth and tiredness were more than I was willing to accept so slowly reduced dose to zero. I had been finding that I couldn't wake up in the mornings. If I did, I felt desperately tired. (I'm usually pretty OK at waking up.)

I stopped the Zapain as soon as I could. Not good to take any longer than needed.

Now for some of the most unhelpful advice. I asked my GP for, and received, capsaicin cream (Axsain 0.075%). And I am still using it. It has helped enormously. But it has been out of stock most of the year. Supposedly back in stock this October but now that has been deferred to April 2023.

It is the only product available in the UK at that strength. Pharmacy and GP have not really been very helpful.

Not to be used while you still have blisters, etc.

Managed to find some in Germany - same potency and it works the same.

ABC Wärme-Creme Capsicum 0,75mg/g Hansaplast med (50 g)

Also:

I had what GP later said was most likely pericarditis. My chest/heart area was very painful if I lay down, so had to try to sleep more or less sitting up. About five days duration several weeks after initial shingles.

ABC Wärme-Creme Capsicum 0,75mg/g Hansaplast med (50 g)

[helvella Administrator]

I urge you to put in a Yellow Card report simply because this happened within a few weeks of vaccination. It is not up to you to assess whether there is a link with anything. All you can be expected to do is put in an honest report.

[PurpleNails Administrator in reply to helvella]

Thanks for reply. 

Deeply unpleasant is right!

Does that cream help with itching / pain or (hopefully) both? 

Dr recommended I speak to pharmacist for cream - hydrocortisone cream was helping itch (I have eczema prone skin & use for rare flare ups) but this was on another level.  

Said not to use long term long term & Pharmacist might not sell for shingles rash - so ask for sting cream.  

Already take antihistamine for rhinitis.

I find the itching soothed by calamine cream & oak bath, but pain is deep.  

Without being too specific the dermatome affected is not a typical location, which ever cream I use must be suitable for very sensitive skin / areas.  

Interesting conversation on pharmacy who asked is rash it over a large area?  (Yes) 

Ill do a yellow card report, will likely need to log for separate vaccines.

I made huge error having 13 days apart.  

[helvella Administrator in reply to PurpleNails]

It's funny how you forget some parts of unpleasant experiences. I think the cream helped a bit with itching. But it is mainly pain that it works with.

Shingles affected dermatomes 3, 4, 5 & 6 for me - mostly left shoulder.

When I first started the cream, it felt a bit hot. But I hardly notice anything now. However, if I am not careful, it is very easy to cause uncomfortable burning - the worst being anywhere near my eyes! (It's my own fault when it happens.)

I use it four times a day. Have alarms set. Trouble is, if you don't use it at the right time, the pain starts to come back but the cream doesn't work instantly, so it can open up a long gap. It is regular, spaced out doses that work. First thing in the morning, lunch, dinner and last thing at night (approx.)

I tried hydrocortisone cream and it might have helped a bit. But not the deep pain.

The pain for me feels as if it is very deep - in, under and between bones and other tissue. As well as surface. And it varies hugely from nothing to quite upsetting. (An odd way of describing pain. But it is always difficult to come up with words.) Sometimes like someone scraping a bone, sometimes like a stab, sometimes like electric shock.

I did also try some lidocaine or benzocaine creams. Both over the counter (one Lanacane product) and prescribed. (When I went to collect, the staff at the pharmacy had a good-natured laugh. I'd been prescribed Vagisil. One of the few prescribable products!) That helped with surface itching but not at all with the deep pain.

[MariLiz]

I use Amitriptyline in a low dose to help with the pain of fibromyalgia. It definitely helps me to sleep at night.

I also have migraines, and have been on pizotifen long term as a preventative. It hasn’t stopped them completely, but means they are less frequent and not as severe.

Hope this is helpful?

[PurpleNails Administrator in reply to MariLiz]

thanks.

Difficult to know if I should start amitriptyline.

[pennyannie]

So sorry read this - wishing you more comfortable - take good care.

[PurpleNails Administrator in reply to pennyannie]

thank you.