Shingles and methotrexate?

[Cheylann]

Hi all u MTX users I still haven't started the drug as am scared of getting shingles. Have had the pneumonia vaccine but wondering whether should have the shingle vaccine before starting. NH'S reluctant to give it to me as u need to be 70 to qualify due to cost. Any advice?

[helixhelix]

Is there a particular reason that you're worried about shingles? Because to me it's so far down the list of things to be worried about that your question surprised me. In over 8 years on MTX I don't think I've thought about it beyond being aware that if I have signs I should head off to GP straight away to get the zostavax shot, and stop MTX for a week or so. And apparently there's now a new vaccine called shingrix which isn't a live vaccine so easier for us.

MTX does have a compromising effect on your immune system, but it is moderate. Often the texts that talk about it suppressing your immune system refer to people who are taking it at much higher doses than us for cancer treatment. Yes you need to be sensible, but paying attention to basic hygiene like hand washing should be enough. In 8 years I've not had any problems with infections at all.

We each have to make our own decisions, but the risk you run of permanent joint damage and heart/lung complications from uncontrolled RA through not taking the drugs to me is much greater than the risk of shingles.

[Cheylann in reply to helixhelix]

Thank u. Like u I would never have thought about it. My rheumatology mentioned that and pneumonia whilst discussing MTX so guess got me worried. Not had a chance to discuss this further with her. Have had the pneumonia one and wondered if needed shingles one before starting. However I have delayed starting MTX for all this silly reasons. Been scared of it but u r right about the damage fm arthritis and going to start without the vaccination.

[NeonkittyUK in reply to Cheylann]

Hi Cheylann, I would say exactly what HH has above ... and it's not something I ever thought of tbh when starting MTX and the nurse never mentioned it as a high risk when starting and the rheumys never have. I guess they hadn't seen much reaction with shingles or it is usually low. Don't let that put you off. You will be monitored very closely and MTX works wonders for so many people giving them back their mobility and getting RD under control. Good luck.

[Cheylann in reply to NeonkittyUK]

Thank u your reply gives me hope as terrified of MTX

[Hopeful1]

I too was worried by not being able to have the shingles vac when I reach the age for NHS if by then I am on biologics. I approached travel clinic who were not sure if OK for me to have it as I was on metho and suggested I spoke to my consultant. He provided a letter to say OK for me on metho . I took the letter to the travel clinic paid my £125 and had the shot with no problems. Later a friend asked me why I had not asked my GP if I could have it at their surgery with my consultants permission as might have been cheaper to go private there or might even have done so on NHS in our circumstances.

This was the advice for me - always check with your consultant as we are all different.

[AgedCrone]

From what I understand about the shingles vaccine - for once it isn't actually down to cost. For many years there has been a regulation you can only get the vaccine on the NHS if you are a certain age - right now you have to actually be 70 or 78 (not 71 or77 )& once you are 80 it is not given at all as it has been found to be ineffective in this older age group.

The vaccine is not given if you are on cancer drugs.....which Mtx is, but taken at a far lower dose than in actual cancer treatment, or if you are on steroids...but unless you are the right age the only way to get the vaccine is Privately when it can cost between £200/300.

I had shingles years after I stopped taking Mtx,& as long as you get the antivirals (I was also prescribed anti biotics) at the first sign it lessens the severity & length of the worst symptoms. I only felt poorly for a couple of weeks.....maybe I was just lucky....but I had no long term effects except a funny pins & needles feeling for about 6 months in the area of the rash which didn't really bother me at all.

Why are you worried about getting shingles if you take Mtx? I don't think I have heard of anyone having that reason before?

For what it's worth I had 7 great years on Mtx,& only stopped because of unusual side effects....which disappeared as soon as I stopped taking it....but catching shingles never entered my head as a reason not to take it.

[Cheylann in reply to AgedCrone]

Because shingles can be very severe. My rheumy asked whether I had had shingles and said it's worth having the vaccine. I've had one for pneumonia but have delayed taking MTX trying to organise the shingles vaccine. However not going to wait anymore. Going to take my chances on MTX. It must be down to cost. Why else won't they give it to u if u r under?

[AgedCrone in reply to Cheylann]

They have been carrying out a trial investigating how effective the vaccine is on different age groups. I don't know when it started, but it seems to be going on forever....& from amongst people I have spoken to, you seem to be never in the right age group....I have never seen any publicity about having it....so who knows when things willappear clearer.

Good luck with Mtx...if it suits you it really changes your life.

[Lizbain1]

I was worried delayed my mtx booked in my shingles vax I chatted to doctor, rhummy nurse drove to surgery and sat down was told I was to young... Since then I have had a blood test as grandson had chicken pox and I am immune to that... Maybe have a chat with doctor x

[Cheylann in reply to Lizbain1]

Apparently u can't catch shingles from chicken pox. Lucky u being immune.

[medway-lady in reply to Cheylann]

I believe you have to have had to have had Chicken Pox to get Shingles I most certainly had both only 40 years apart. The Chicken Pox virues lives on and on the odd occassion causes Shingles.

[Nuttyshirlz]

Hi

I’ve only been on methotrexate a year and to be honest it’s never crossed my mine. Only thing I wanted was some pain relief. I did listen to my nurse when I was first asked to try it. Also read up a lot on google and read up all side affects etc.

Got loads of hand sanitizers but I’ve being fine.

🙂

[cheryls56]

hi i am on methotrexate i have been on it for 17 years and i have had shingles that was about 10 years ago i may have been lucky but it was not to bad but havea chat with your rhummy good luck xx

[juneann]

Morning, Sorry I don't have time at the moment to read others replies. You may never get shingles and if you did you get straight onto your GP and pick up an anti virus. One thing my consultant taught me is to deal with the here and now and not the what ifs. Here's a what if...if you don't get RA under control inflammation is a huge problem. It's not what you see on the outside it's what goes on on the inside. RA is progressive and needs slowing or halting, whilst there is inflammation showing in the blood it is a threat to your internal organs. Don't wish to be a scaremonger but just facing facts, facts we can deal with by taking preventative measures. Research has shown that the sooner the correct treatment is started the better. Have faith.

[Cheylann in reply to juneann]

Thank u. My arthritis isn't showing in my blood but I do hear what u r saying about the "hear and now". Good advice as it does need to be brought under control ASAP.

[AgedCrone in reply to Cheylann]

This might be a daft question.....but if your RA isn't showing in your blood......how were you diagnosed with Rheumatoid Arthritis?

[Cheylann in reply to AgedCrone]

From my symptoms. I also questioned it but apparently a lot of people who have arthritis symptoms but normal blood markers. This is why I've taken so long over taking methotrexate as I haven't been convinced but rheumy assures me I have some sort of immune inflammation disease and diagnosed as psoriasis arthritis? Who knows?

[medway-lady]

I've had shingles and say get the jab 'cos it really hurts. There are anti virals now but if you ca avoid it then do.

[Kariss]

Hi Cheylann. Don’t let yourself worry about catching shingles! I have suffered repetitive shingles for many years and am also on mtx. The drug didn’t cause the shingles, I was already getting it when diagnosed with RA and like you I panicked and let myself get very poorly by refusing to start the meds. I was finally persuaded that getting the RA under control should take priority and was glad I did because I am so much better. Now I just try to take care not to be exposed to people with shingles or chicken pox if I can and that has not been easy as I worked with children for years! Although I am now on a prophylactic for the shingles I continue to periodically break out (usually brought on by stress or a bad cold), and when I do I simply have to leave off the mtx until recovered. Don’t be scared to give the drugs a try, I have been on mtx for 6 years now and they were the best help I have had and, fingers crossed, may also work for you.

Good luck!

[Cheylann in reply to Kariss]

Thank u so much for your reply. U have put my mind at rest. I've made all sorts of excuses nit to take MTX but now have to get these aches and pains under control. Just wondered if there is any value in having shingles vaccine before starting.

[Kariss in reply to Cheylann]

I also asked about having the vaccine, thinking that it may stop the recurrent attacks, but I am not 70 yet so wasn’t eligible either. They said it probably wouldn’t be effective for me anyway as I had already had it so many times so I don’t expect I will ever have the vaccine now.

Good luck with the MTX, I hope it helps.

[Cheylann in reply to Kariss]

But my question was because ive never had shingles.

[Cheylann in reply to Kariss]

However Kariss I don't want to suffer shingles as u have if I don't need to so just wanted to know if it was worth having the vaccination.