How long to stop methotrexate when you have shingles.

[Jeff1943]

I'm 81 and on 22.5 mg Methotrexate self-injected once a week plus 200mg daily of Hydroxychloroquine. Then I was put on 5mg Prednisone steroid tablets for 6 weeks (3 tablets daily for 2 weeks then 2 tablets daily for 2 weeks then 1 tablet daily for 1 week.These are all immune suppressants so no surprise I have ended up with shingles round half my waist. Was given antiviral tablets for one week. I stopped the Methotraxate injections for a week and stopped the Hydrox too. My Rheumatologist says to restart these two medications now - my blisters have mostly crusted over but the nerve pain is still bad and even getting worse maybe.

Does anyone have a view as whether it's too early to restart the immunosuppresants (Mx and Hydrox) please?

[KittyJ]

You should do what your rheumy tells you, it doesn’t matter what anyone here thinks as your rheumy is the one who knows you and is qualified to answer 😊

[Jeff1943 in reply to KittyJ]

Thank you for your reply. I was concerned about how much my Rheumatoid knows about Shingles but you are right. However, they did prescribe three immuno suppressant meds (and wanted to prescribe a fourth which I fortunately resisted) which resulted in my shingles (their diagnosis) - an outcome they didn't take into consideration.

[KittyJ in reply to Jeff1943]

They will come across immunosuppressed patients getting shingles a lot I would think so they’ll know what to do. 4 immune suppressants? That’s a lot, the most I have had at once is two plus two Dmards. I hope you feel better soon.

[Jeff1943 in reply to KittyJ]

Thanks again, KittyJ for your good wishes and wise word.

[bpeal1 in reply to Jeff1943]

2 DMARDs plus steroid is not uncommon. I’m on a biologic plus 2 DMARDs and occasionally have steroid injections too. Immunosuppressants do make you more susceptible to shingles but not everyone gets it, you were unlucky. Take the advice of your rheumatologist as they know the whole situation, and will have come across other patients who have had it. Also remember uncontrolled inflammation also makes you more susceptible to infections so it is a balancing act.

[Jeff1943 in reply to bpeal1]

Thanks for you reply, I think the fact that I am 81 makes me more vulnerable to Shingles, it can be very painful and take many weeks, months and even years for the Post Herpatic Neuralgia to disperse which is long after the blisters have healed. I'm pretty sure I had the Shingles jab a few years ago, it's not a guarantee you won't get Shingles but reduces the chances and can mean it's less severe if you do catch it.All I would say is to seriously consider having the vaccination, RA can be bad enough as it is without the very painful nerve infection of Shingles.

[Doodlereggie in reply to Jeff1943]

hi I do feel for you as I have just had a nasty attack of shingles and know how painful it can be.I had the jab 8 years ago but still got shingles.I had to stop my JAK meds while on the antivirals for a week, but did not pause my prednisolone as been on 5mg holding dose for over 20 years and can be bad to stop abruptly,I understand.Got antivirals on first day of rash,which does help.I have been very lucky,as ,although very painful for 3 weeks have escaped the post hepatic pain.G.p.did give me Amitryptoline for the nerve pain,but did not need to take them,fortunately.Try your rheumy nurses helpline if you can,as mine here in Enfield were very helpful,and always phoned me back.good luck,keep us posted x p.s. I am 80 this year and found it all very difficult to cope with,especially at night.My family had not had chicken pox, so wisely stayed away,but did leave my shopping on the doorstep,which helped,but felt very isolated.!

[Jeff1943 in reply to Doodlereggie]

Thank you for your reply, Doodlereggie, your information is very helpful.

[bpeal1 in reply to Jeff1943]

I don’t doubt the neuralgia is painful but if I understand it correctly it is the after effects of shingles, not a sign of a current infection (however, please discuss with a doctor to confirm this). A bit like if you have a nasty cold which leaves you with a cough which hangs round, or like the poor people who have long covid (they are not still infected with the virus but are suffering the after effects).

[Jeff1943 in reply to bpeal1]

Thank you bpeal, this confirms what my GP and Rheumy nurse told me: that to hold off on the immunosuppressants for a short while whilst recovering from the blisters but then restart as they make no difference to the ongoing nerve pain which is the main problem with shingles.I've tried amitriptyline but no success so far, so I rely on co-cydromol at night. Whether the nerve pain becomes PHN and for how long remains to be seen.

[Seatgeorge]

People on here are very helpful and knowledgeable, however your doctor and consultant are qualified so when they tell you to restart your meds that's what you do,good luck.

[Jeff1943 in reply to Seatgeorge]

Yes I agree, but when this is all new it's good to get a second opinion or other peoples' experiences. My Rheumy team are excellent but with the advantage of hindsight they might have seen that adding a third immuno-suppressant (and a fourth which I fortunately delayed) Shingles could be an issue for an 81 year old who had had too many steroid injections and tablet courses over the past 12 months.

[medway-lady]

Advice varied I was admitted to hospital with Shingles and had Acylovir then the vaccine got it again and then again. First time meds stopped till blisters crusted, then told carry on with meds. I was prescibed Pregabalin for pain it worked well. Try the Deep Freeze spray that also helped me.

[Jeff1943 in reply to medway-lady]

Sorry to hear that you got the Shingles 3 times despite the treatment you received. Thank you for your suggestions about Pregablin and deep freeze spray.

[Keepinmovin]

I have only taken Hydroxychloroquine - one tablet per day. I have found it to be effective in keeping my RA at bay. However, I can't say that my symptoms have been very severe. I have a viewpoint that RA can attack when I am under abnormal stress, or unwell, but that is just my opinion, not backed by evidence that I know of. I don't have any other medical conditions. Eating a good diet including omega 3's seems to be helpful to me. Maybe I am just lucky.

I hope you get well soon.

[Jeff1943 in reply to Keepinmovin]

Thank you, long may your RA be mild. I have taken Omega 3 for 50 years but it didn't prevent my RA. I often wonder whether vitamin supplements that increase immunity are counterproductive when RA is caused by an overactive immunity system.

[KittyJ in reply to Jeff1943]

You wonder correctly Jeff, this is why taking supplements should always be discussed with our rheumys before taking them 😊

[Jeff1943 in reply to KittyJ]

They don't know KittyJ, which is why they come up with the stock answer that vitamin and other supplements have not been clinically evaluated. When I asked my Rheumy about vitamin c they said they didn't think it was a problem but I could tell they really didn't know for sure.20 years ago when my wife was on chemotherapy someone raised the question as to whether large amounts of vitamin c reduced the effectiveness of the chemo medications but there was no definitive reply and as far as I know there still isn't.

[KittyJ in reply to Jeff1943]

sorry Jeff I misunderstood, I thought you were talking about boosting your immune system supplements rather than just vitamins 😬

[Keepinmovin in reply to Jeff1943]

I don't take omega 3 oil supplements, but I eat oily fish, such as sardines and mackerel.

[Jeff1943 in reply to Keepinmovin]

But do you eat them daily in the amounts that will produce Omega 3 sufficient to give maximum protection to the heart?

[Hidden]

Sorry to hear this and I wish you a speedy recovery. Although we respect our rheumatologists, I do think when we reach our seventies and eighties, we have lived with our bodies for a considerable time and develop an instinct of what works for us. It also depends on how bad our RA is at the moment. Sometimes, when I get a bad infection, I delay my RA meds for a little bit longer and go by instinct. I do tend to have low neutrophils and want to build up my natural immunity for a few extra days. Perhaps you should go back and discuss this with your rheumatologist, nurse or GP , and let them know your doubts. I understand that when medications are tested there are less tests on the elderly. I also think than when meds are given our age and body mass makes a difference to our reaction to them. It is important to discuss our concerns over our meds with the people who prescribe them.

[Jeff1943 in reply to Hidden]

Yes I do discuss with them whether too many immunosuppressant meds have caused my shingles but was told it was just bad luck.