Shingles vax

[Babbaganoush]

I am nearly at 4 years with pmr and have been on various doses of prednisone and still cant go below 5mg without gout like symptoms. I became ill with 2 months of having the shingles vaccine. I have always been healthy til then. I am coming up 65. Was never advised of the side effects. Has ruined my life. I would be interested to know the experiences of others in my position.

[Hidden]

Hi babbaganoush, welcome...do you know which shingles vaccine you had?

[Babbaganoush in reply to Hidden]

Zostafex ?

[Hidden in reply to Babbaganoush]

There are a few but the aim is to take a non live vaccine for immune suppressed people. Here's a bit of bumpf....

vk.ovg.ox.ac.uk/vk/shingles...

[SheffieldJane]

Welcome Babbaganoush. I am sorry that you are in a dark place right now. I expect most of us have thought that our lives have been ruined by this at low points. Trust me when I say that your life has been changed not ruined. More detail from you will enable people to share experiences and knowledge with you

[PMRpro Ambassador]

I really think whether you consider life with PMR and pred is ruined depends on a few factors. I have had PMR for over 15 years now. The first 5 years were without pred at all - I was not diagnosed, it wasn't from choice. Once I got it, life was fairly much back to normal although I wasn't as fit as I had been 5 years earlier. I have never compromised on dose - I take what I need to feel as well as possible. I have had to change a lot things - but that might have happened anyway so why not accept it? I had a bad interval on one form of steroid - gained a lot of weight and had other signs of Cushings - but lost it all by switching to another form of steroid and cutting carbs drastically.

No - as Jane says, changed, yes. Ruined? There are worse things to develop/catch,

[carolBF in reply to PMRpro]

Hi

can I ask which steroid you were on before when you had side effects and other signs? And what are you on now and do you still get any other side effects

Thanks

[PMRpro Ambassador in reply to carolBF]

Originally I was on prednisolone and had no problems. Then I was switched to Medrol oral methyl prednisolone and that was awful. The methyl part of the molecule is suppose to give it increased antiinflammatory efficacy. For me all it did was increase the adverse effects! I was switched to prednisone, in the form of Lodotra, a delayed release formulation that you take at night and it reaches its peak in the blood at about 4am so combats the inflammation before it even gets a hold, improving morning symptoms greatly. As far as I know after 6+ years on it I have no identifiable adverse effects.

However - it isn't available in the UK except privately and for some reason is extortionately expensive in the USA .

[Janstr]

I wouldn’t say my life is ruined, just different. There are lots of things I can’t do that were a large part of my life before, and I cant do 2 things in one day (like walk in the morning, and then go out for dinner at night), but that’s Ok. I just choose In advance, and often turn down off the cuff invitations if I feel I can’t go. I always explain and most people understand.

[Hidden in reply to Janstr]

I like the idea of cuffing invitations. Although I miss my dog "walk", being shielded, I am not missing the subtle and not so subtle pressure to do more "things".

[Linny3]

I am so sorry you are having such a tough time at the moment. I wish I could get to 5mg.

Have been on pred for 3&1/2 years. Can't get below 12mg. Currently I am in a flare that came out of nowhere. Dr. put me on 30mg for a week, then 20 mg for the next week. That really didn't help a lot. Turns out it was hip bursitis and oral medication doesn't usually help that. I need a steroid shot in my hip but am scared to go in to emergency because of the virus. So I suffer. Now I can't get back down to my 12. The told me to drop to 12 after I was finished with the 20mg. I just can't do it. I am at 15 and my body tells me I just can't go any lower. When I try, I get recurring neck and arm pain.

Soooo long story short. It has been a misery for me. I suffer many side effects from the pred that has changed my life. I totally understand what you are feeling at this moment. I also know that each day is different. On the occasional good day I thank God for it. The others I just try and cope the best I can.

Take Care

[PMRpro Ambassador in reply to Linny3]

Have you asked for advice on managing the side effects of pred? Many, if not most, can be mitigated or managed when you know how. Your doctor probably won't know or advise but we can. Just ask

[Linny3 in reply to PMRpro]

When my feet and legs swelled up my rheumatologist said to see my family dr.

He wasn't much help. gave me water pills that did nothing and he didn't seem to be interested in any further app'ts. . My dermatologist said the mess on my arms was old age spots and had no further help. The awful breaking out started about 1 week after starting pred. over 3 years ago. It is NOT old age spots. I have always continued to be in pain even on higher doses of pred. Dr. thinks fibromyalgia but I am allergic to the drugs given for that. So, no help there. I have had a pred headache since the beginning. No one interested in that and pain pills don't seem to help. I have all kinds of crazy things go on with my eyesight. One day I can hardly see TV with my glasses and other days my eyesight is clear as a bell without my eyeglasses. My ophthalmologist had no ideasas to why this is happening. Of course all of this could be eliminated if I could just get off

of the pred. ):

I am considering another dmard. I think I may have been on all of them, so not sure what they would give me.

[PMRpro Ambassador in reply to Linny3]

What have you tried?

[Babbaganoush in reply to PMRpro]

Nothing else. Just want to be off pred. The problem is i thing that pred masks a lot of other aches and pains and any further withdrawal highlights these. Such as gout. Dr says go on gout pills. Had enough of all these devastating drugs.

[PMRpro Ambassador in reply to Babbaganoush]

The only reason gout is masked is because pred is one of the treatments for acute gout - either you risk an attack which will need to be treated or you take the medication. My husband has similar complaints to you about "another pill" but believe me, there are no complaints about his allopurinol tablet, he even manages to grind it up himself (too big for him to swallow). Two attacks of gout were more than enough for him - one was enough for me!!!!

These medications are not devastating, they provide a better quality of life in the meantime. You would have the choice of methotrexate or leflunomide as a means of reducing the dose of pred but there are no guarantees they will work at all and it is very unusual for patients to get off pred altogether, though it does happen My experience with methotrexate was not pleasant. It seems leflunomide can be fairly effective but some people DO get devastating effects with it - one patient said she was tied to the loo and was unable to leave the house for the first 2 months. It didn't improve until she stopped taking it. Another has had to cut the dose because she developed peripheral neuropathy and a severe tremor.

[Babbaganoush in reply to Linny3]

Thankyou for that. What hurts the most is i voluntarily had a vaccination thereny giving myself this disease. I had the hongkong flue vac at 13 years old and i became dilarious for a few days. Very bad reaction. I should have learned from that.

[Babbaganoush in reply to Linny3]

I appreciate your empathy. Hope you get through it all well. I feel betrayed by the whole medical system. Cheers.

[Linny3]

Tried Methotrexate at 3 different times, Hydroxychloroquine tried 2 times. There is a third one but I can't remember the name. Side effects for all of them was the reason I stopped them.