can't tolerate steroids

[verzura]

What happens if, like me, you cannot tolerate steroids? What alternatives....?

[DorsetLady PMRGCAuk volunteer]

Hi,

What alternatives to steroids? - nothing unfortunately that works as well.

Why can’t you tolerate them? A bit more info might enable us to give advice on how to manage them!

[suzy1959]

What do you mean by not being able to tolerate steroids? There really isn’t an alternative and, despite their side effects they are a wonder drug for us. Some side effects diminish with time and others when we can get the pred. down to a lower level.

You will see a lot of posts here about the pred. because understanding this drug and it’s effects often preoccupies us the most!

[SheffieldJane]

How do they affect you?

It maybe that we can give you ideas on how to reduce side effects. There is nothing else,, alas, that will deal with the inflammation we suffer. I don’t think I would be walking without them the way I was going - seizing up by the day. Some patients are given Methotrexate to help them get off steroids more quickly, but that has significant side effects too. Actemra is given for GCA and complex unusual cases of PMR ( in the U.K.) but it’s yet to be proven really.

[jinasc]

If you cannot 'tolerate' steroids then your medics would know and sent you to a specialist and found the cause or Is it really that it is the side effects you are talking about?

I did hear of one person who had a serious problem, but the medics sorted it all out. She then was on pred.

[jwb43]

Verzura, I am also intolerant to prednisone. I have tried it on several different occasions the longest I could continue to take it was three weeks. It did help my pain but I had bad palpitations, terrible night sweats, chronic insomnia, I became very moody and irritable almost lost my job because of that. I got muscle weakness to the point where I could barely stand up or walk. I constantly felt like I was sick with some type of a flu or respiratory situation.

Then after the three weeks when I tapered off of it I went into adrenal insufficiency for approximately two weeks where I had no energy could hardly move I had vertigo and nausea. So I would give anything to be able to take it but I would rather have the pain go through that again.

[PMRpro Ambassador]

No alternative - most of us have unpleasant effects at first but most of them can be managed when you know how. The longer you are on pred the less you experience them - your body gets used to it to some extent.

Even in the case a US rheumatologist can arrange funding to use Actemra/tocilizumab you still start on pred and if it is GCA you have it will be a high dose - the Actemra is just a very expensive steroid sparing drug.

[Green_girl]

I couldn't take steroids by mouth, as I found out when being given them for another complaint and they made me very, very seriously depressed. The Rheumy I was under for PMR agreed to give me injections, every two weeks to being with and then latterly every month - they worked a treat, no sweats, no big issues with sleep, no weight gain. As each dose wears off, you do have to put up with some pain, but I always found it manageable and could phone the hospital to get jabs brought forward if the pain was too much. The only bad result was osteoporosis (which happens with tablets too anyway - and not everyone get this). I did have to go to hospital as an outpatient for the jabs, but it was a small price to pay for the help and pain relief. In the latter stages I was put onto methotrexate as a steroid sparing drug, alongside the jabs - and this enabled the jabs to be further apart, thus helping with the osteoporosis issue.

Might be worth suggesting this to your medic as a cheaper option to explore than Actemra in the first instance??

As other have said Pred is best - and to go through PMR with no drug help could possibly leave you with damaged muscles, so you need to think very carefully about options. I do hope you have a supportive 'medic' who can listen and advise?

I wish you well and hope you can find a path through this.......