alternative treatment to steroids

[manxfoodie]

only days after diagnosis, i do NOT want to take steroids

today i start acupuncture and then a full body scan ( not in a machine !)has anyone been down this route please

[Constance13]

There is no alternative to steroids if you have PMR or GCA!

[Kendrew]

Hi manxfoodie.Firstly, I'm sorry to hear you've been diagnosed with PMR/GCA but very pleased you've found this reliable and informative forum.

Unfortunately, as Constance13 has already said, there is no other treatment for either of these two related conditions, and without the steroids, your pain, stiffness and mobility will decline rapidly and you'll become very poorly.

There are over 14,000 of us alone registered on here, and not one of us wants to be on steroids but not one of us has been able to discover an alternative to them. Many have tried...believe me!

There are lots of anecdotes and alternative therapies that have been used to successfully ease many of the side effects and meds-related issues that can occur, but sadly, nothing to replace the steroids.

Like you, I was utterly against steroids, particularly as I've always been against taking any medication of any kind... even paracetamol! I was completely horrified when told they were my only option, but 2½yrs down the line, I've learnt that although they're still a toxic drug, they're also not the enemy! I educated myself as much as possible and researched PMR, to the point where I now know how to minimise and manage any side effects (quite successfully too I have to say) and how to prevent any other damage they could potentially cause.

Others with more knowledge may be along to advise you further but in the meantime, all I can do is try and reassure you that you'll be ok. 👌

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome,

The 64 million dollar question that most new patients ask....wish I had a dollar or pound for how many times I’ve read that.

Many refuse steroids at the beginning of their journey, but find that after trying other methods of controlling the symptoms including diet, supplements, alternative therapies have to eventually admit defeat and go down the route of Pred.

None of us WANT to take Pred, but invariably it’s the only option.

Obviously, some do manage without steroids, but honestly I doubt if they are on this forum. Plus it may well be a less serious form of the disease we discuss on here.

I’m sure in days of yore many went through PMR or GCA without Pred because they just weren’t diagnosed, but I doubt if life was very pleasant for them.

Plus you have to remember that if your inflammation is not controlled properly it can lead to many other issues including GCA - a much more serious illness. GCA left untreated can lead to aneurysms or, more commonly, sight loss.

We have a few patients recently who have lost complete sight, and I personally lost sight in one eye because GCA was undiagnosed.

On diagnosis in hospital A&E was told that there was a 50/50 chance I could lose sight in remaining eye.

I took that first dose of Pred as fast as I could! I had to wait another 2 weeks before it could be confirmed that my other eye was okay. The longest and scariest 2 weeks of my life. I wouldn't want anyone to go through that experience.

I do not intend to scare, but I do say, think very carefully before you reject Pred. Yes there are plenty of unpleasant side effects, but most can be managed. I started at 80mg and it took me 4&half years to get to zero. I did have slightly raised eye pressures and blood sugars for a few months but no extra intervention required, both returned back to normal. I did have a cataract replaced, but who’s to say I wouldn’t have anyway. I’m no madder now than I was pre Pred (but that’s not saying a lot!). My adrenals were a bit sluggish to start with, but now after being off Pred since September 2016 they are completely fine.

Take care, and think about this carefully- no drug is all good...or all bad.

There are related posts on this subject - have a look - can be found either on right hand side of screen or scroll down to end of posts - depending what device you are on.

[123-go]

Constance and Kendrew are spot on, manxfoodie.There is NO credible alternative to Prednisolone.

[Arflane97G]

I was only too happy to take steroids as I had become practically bedridden in a matter of weeks - however I do understand your reluctance as they do not come without side effects. At one point I was keeping a drug s diary as I was taking so many and a large number were to counteract the effects of the others which did not sit well with me. I explored a range of alternative therapies mainly to help me to taper off the steroids rather than replace them - acupuncture, Bowen therapy, aloe drinks, meditation etc. Daily naps and yoga also helped. I count myself as fortunate as I was able to stop taking steroids after 18 months - never increased my dose but sometimes stayed at the same level for 2 months rather than one - and I was able to do my first run yesterday- big achievement for me as I learn to trust my body again. PMR is a horrible condition and can damage your body in all kinds of ways so I would urge caution, very best wishes

[123-go in reply to Arflane97G]

Congratulations on yesterday's run. May it be the first of many!

[Arflane97G in reply to 123-go]

Thank you 🙂

[SnazzyD]

Hi there, you know what I’m going to say. There have been so many who have gone down the other than steroids route but we never hear of any resounding successes with alternatives being more than supportive.So, what is happening is your body has decided the blood vessels in some areas need to be attacked by the immune system. This makes the blood flow to the muscle poor so you get pain. The Pred stops the damage so you are needing a therapy that is more than a pain killer. The process of inflammation is varied and caused by different substances in the body triggered by a multitude of different pathways. The wonder (and problems) with Pred is that it is the only drug (an artificial version of your own Cortisol) that deals with almost all. Until your body decides to stop attacking itself you need that Pred. Now there’s nothing to say alternative therapies won’t help your body calm down as how you live your life is important. Don’t forget, toughing it out means you may become incapacitated and that is also full of risk.

I had GCA and nearly went blind with very little notice and the doses needed to treat it make PMR doses seem like a walk in the park. Also there is the risk of large vessel disease that can be symptomless and then you find you have an aneurysm and high doses of Pred again or stroke. I was on high doses of Pred and didn’t put on weight, didn’t become diabetic and I have been off Pred for over a year after 3.5 years of reducing doses; you just need to change your diet to avoid that. Remember your dose reduces so you are not on the increased dose all the time but the secret is not reducing too fast because your body calls the shots. We’re all horrified at first. I remember sobbing in our drive as I talked to my neighbour after diagnosis.

[Knit11 in reply to SnazzyD]

How did you manage to avoid gaining weight?

[SnazzyD in reply to Knit11]

Very low carbohydrate diet as recommended here. I cut out pasta, potato, rice, flours, maize and sugars. Fats are ok (but not masses and masses) protein is a must. Lots of veg. Now i don’t have Pred it doesn’t occur to me to eat those things apart from chips occasionally. Desert was berries in full fat non-dairy (can’t eat dairy) yoghurt and a few squares of 85% dark choc. I also had a couple of glasses of wine a week once wine stopped tasting foul. Low salt above 10mg Pred helps stop fluid retention.

[PMRpro Ambassador]

These are two posts I wrote in the past about living with unmanaged PMR:

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Most people have PMR for up to about 5 years - but are on pred at some dose or other for the entire time until it burns out, they get to zero and stop pred altogether. Quite a few only need pred for up to 2 years. But a few need it for longer or have to live as described above.

Bear in mind that some of the so-called pred-effects are also effects of PMR - weight gain, depression, moos swings, loss of bone density and other things are also found in patients with PMR and not on pred. As I wrote, I had PMR for 5 years before I was offered pred - and it was a hell I have no desire to return to. I was in constant pain, isolated and depressed. 15mg of pred led to a minor miracle,

There probably IS an alternative group of drugs that would work for PMR, the IL-6 inhibitors, biologics. Tocilizumab/Actemra has been trialed in GCA as a pred sparer and it works very well, getting about half of patients off pred altogether in a year, the rest to a much lower dose. The same would probably be the case for PM - but it hasn't been through clinical trials and so is not approved for PMR anywhere in the world. In most countries (except the USA) even its use in GCA is strictly limited in time and only for hard to treat GCA patients. This is mainly because of the cost - IRO £12K per year. And there are adverse effects to its use too.

[PMRpro Ambassador]

And I do have to ask - what SORT of "whole body scan" if it isn't in a machine?

[jinasc]

It has all been said, except to tell you that many people would not be alive with out pred. Its is one of the most powerful drugs we have and one of the oldest. Which means that 99% of the side effects are known and can be dealt with.

Some youngsters (ie children) who have complex illnesses would not be living without Pred and they are on it for the rest of their lives.

There is a lot of mis-information about pred, a lot of scare stories. I for one am grateful, my Mother had both PMR & GCA and her sight was saved. Many years later I developed GCA and once again sight was saved currently no other drug has that potential.

Some people are not diagnosed in time and lose their sight. Neither PMR, GCA or around 800 orphan illnesses would be controlled without Pred.

Your decision, your body - but make that decision with full knowledge.

[piglette]

Personally I could not have lived without steroids, they are considered one of the wonder drugs of the 20th Century. In my case acupuncture was a total waste of time. You cannot be too bad if you are OK to go out for acupuncture. I had trouble getting out of bed in the end.

[Effectual]

Following your post with interest as in the same position.