Starting to take steroids

[TURQ8]

Starting on Steroids.

I was DX in March 2021 and told by GP to take steroids and Alenodric Acid. As I knew nothing about PMR or Steroids or the rest and I was not in great discomfort or distress, I declined the medication while I investigated what it was all about.

Having spent the intervening time reading as much as I can in this group, other groups and the PMRGCA charity website, I have been on a Keto type diet for about 6 weeks but still have the same symptoms. So with advice from friends and family I think I should opt for taking steroids despite the varied and fearsome side effects.

Do you think if I don't take steroids the PMR will ever get better and am I doing more damage to myself by not taking them? Or am I risking more damage by taking steroids?

Also, as I am not in great pain and do not have fatigue I want to start on a dose as low as possible and taper down as much as possible within the first 30 days, hoping to avoid some of the side effects like insomnia. I already have dire insomnia and if its worse not sure how I'd cope.

I feel the whole situation is made worse by the problems getting to talk to a GP at the moment. At my surgery the system is on the phone for the 8am free for all to get a telephone appointment, if you are lucky. Nothing anyone can do about that so we have to live with it. I can't tell which GP I will get to talk to and its all a bit ad hoc as to whether the one I speak to will know much about PMR.

Sorry this has turned into a bit of a long post.

[DorsetLady PMRGCAuk volunteer]

PMR is a self limiting disease...i.e it comes when it want to, it hangs around as long as it wants, and it goes when it feels like it.

You may be one of the lucky ones where is only last a couple of years, or you may be one where it’s lasts a lot longer - nobody can tell you that.

Steroids are not curing the illness, they are only controlling the resultant inflammation. However, if left uncontrolled that inflammation can cause a lot of issues to your body, blood vessels, muscles, organs as well as the possibility of GCA, which can cause sight issues.

We all understand your reticence to taking steroids, nobody takes them because they want to, but very often they are necessary.

You have to make that decision.

[TURQ8 in reply to DorsetLady]

very many thanks for your help.

[DorsetLady PMRGCAuk volunteer in reply to TURQ8]

Similarly to PMRPro’s story, my GCA was untreated for 18months - GP went off at a tangent with diagnosis.

It’s not a period in my life I would want to repeat, nor others to go through...and I ended up losing sight in right eye - unnecessarily.

So please think seriously about it.

.

[TURQ8 in reply to DorsetLady]

This has been exactly the help and advice I needed from people who know.

[PMRpro Ambassador]

If you have PMR there is inflammation in your body - and long term even low level inflammation can do damage increasing the risk of other disorders in the future, including depression, peripheral vascular disease and even cancer. It isn't a simple equation of pred bad, no pred good.

Personally I wouldn't take the AA until you have had a dexascan - I didn't (in agreement with a different GP) and 12 years on my bone density is still very little changed from the level 2 months into pred.

This

healthunlocked.com/pmrgcauk...

is my story about managing PMR without pred. It was horrible! There also seems to be some anecdotal evidence that ignoring it for any length of time (I didn't, the doctors did) seems to go with a longer patient journey later once you are on pred. No idea why - just seems to be common amongst the un-diagnosed.

I still have PMR symptoms without pred - a very small proportion of us have it for life and need a sizeable dose for comfort. But a study found that half of patients need pred for more than 6 years, albeit at a low dose. Prof Dasgupta says he keeps some patients on 2-3mg indefinitely to reduce the risk of relapses - and it isn't unusual for people to find even 1-2mg is plenty to keep them well and happy - zero isn't.

You could try starting with 12.5mg - that is the bottom of the range of recommended starting doses. You could even try 10mg - it has worked for some and if you really don't have much in the way of symptoms it might work. However - don't make the mistake of thinking you can reduce within 30 days - you might not, PMR calls the shots, not what you want to do. There is no point taking too low a dose - if it isn't enough to manage the symptoms you might as well take none because left-over inflammation is like a dripping tap and a bucket: the bucket will inevitably fill up eventually and overflow and you will be back where you started.

[TURQ8 in reply to PMRpro]

Many Thanks for all your help. I feel clearer now.

[Coffeebeans]

Just to add to the fab advice and good reasoning for taking it, quality of life is so important and constant pain, even at low level is so tiring.

You are armed with the right info. You can watch the sugar intake, keep mobile within your limits. If a lower starting dose work then even better. Just don't rush a taper down and risk a flare up as you MAY need to go higher to get it under control.

Every single one of us understands the difficulty of the decision though.

[TURQ8 in reply to Coffeebeans]

Thankyou. I am not sorry at the moment, that I took a couple of months to find out as much as I have about condition and treatment. I feel much more able to cope now and where to go for advice. Next battle - to get to speak to GP!

[Coffeebeans in reply to TURQ8]

That's great - I'm similar in that I like to research and look at options.

Best of luck.

[TheMoaningViolet]

Hi, are you confident about your diagnosis? If so, and given that you are not in a lot of pain, it is possible that steroids will control the disease very well and you will have a pain-free journey. Starting on Keto was good, it will help you to battle any blood sugar issues that Pred could induce. You got the right idea about adjusting your lifestyle to try to help yourself as much as possible; as DL said, it is unclear how long it will take, and it cannot hurt to live as healthily as possible. Regarding AA, I was persuaded to take it prophylactically even though my DEXA was good, but I stopped once I got down to 5mg of Pred which took about 8-9 months. I struggled with the decision to accept the AA much more than with the decision to take steroids as living without pain and protecting my body from the consequence of constant inflammation was a no-brainer for me. I also didn't take Omeprazole until I needed it and once I stopped AA, I was able to taper off it as well. I am sure you will make the right decision and good luck.