PMR and TGA will it ever go ???

[Margaret1951]

Hi, I am new on here and had my very bad flare up of TGA which I thought was my migraines 4 years ago and on within 3 days was on 60mg of preds, eye clinic, no one could enough for me.

Then last year guess what, I could hardly walk as my muscles felt like someone was twisting them with their fist !! They were so sore and I could hardly walk, doctor diagnosed straight away I also got PMR .

So preds were increased once again which I hate taking !! Went down to 7.5mg and every time have to up to 10mg which does the job.

Go back to 7.5mg in a couple of days again thankfully but I know it's going to flare up again as usual, I just can't seem to get lower than 7.5mg without one or the other flaring up. I am fed up with the weight gain as diabetic also.

Anyone had any luck at coming off the prednisoline ? Or gone into remission like my doctor said within 3 years ( I had it 4 years now )

Is there anything else we can take instead of preds ? Or are we doomed for life with our problems ?

[HeronNS]

Sorry you are having such problems. Quick question - are you reducing from 10 directly to 7.5 each time? If so, that could explain much of the difficulty as you are probably experiencing steroid withdrawal.

[Margaret1951 in reply to HeronNS]

Hi, yes I am as that's what the doctor told me to do but I personally want to come down just half an mg a week and thinking of doing it without telling him, yes I am naughty but it's my body suffering. I am fed up with these diseases taking over my life, I am nearly 66 and just want to lead a normal life again ( some hope )

I have osteoporosis because of prednisoline so on calceos tablets and alendrolic acid tablets once a week ( but don't take them every week )

I have read others problems on here so I am glad I am not on my own anymore , I thought it was just me !

Thank you

[HeronNS in reply to Margaret1951]

It's recommended that people never reduce by more than 10% of the dose, and stay on each new dose at least a month. There will be experts along to give you advice, but meanwhile check out this post:

healthunlocked.com/pmrgcauk...

I've used this plan to reduce with barely a hiccup to 2.5 so far. I started when I was at 10 mg about eighteen months ago. As our resident guru, PMRpro says, "It isn't slow if it works".

My doctor was ok with me using this plan, although she really did want me to be faster, but now she's really happy with me!

[piglette in reply to Margaret1951]

I was told that under 10mg if you reduce by half a mg a month you should have few problems. I am sure there are some who can go faster of course like 1mg a month, but I don't think I would go faster than that.

[HeronNS in reply to piglette]

Using the dead slow method once I got to 8 mg I dropped .5 mg for the first half of the taper, then a further .5 for the second half of the taper. I did this successfully until I got to 3. I'm now at 2.5, which actually took me three months to arrive at, and I've been at this level for well over a month, and starting taper by .5 to 2. It does get harder as the dose gets lower as each reduction is a larger percentage of the whole, but on the other hand the side effects are negligible.

[PMRpro Ambassador in reply to Margaret1951]

Even 1/2mg a week is a bit much - 1/2mg every 2 weeks maybe...

[Margaret1951]

So if I reduce to 9mg do you mean from 10mg ? And stay a month on that dose ? My doctor will be fine about this as I only go to him normally for my blood tests , which are never normal hence increase of preds. Or when this flares up.

[TooSore]

Folks in the know will be along with more wisdom but I would start at 1 mg per month until you get to 5 mg and if you start having difficulty, stop for awhile and try .5 per month. If you've been having a lot of problems try one of the tapering plans that sneak the lower dose in with days of the "old" dose in between. Also watch what you're doing on the days you reduce the pred. I've learned the hard way - busy/stressful days at work, colds/infections all cause too much stress on the body and will sabotage your efforts. I now plan around long weekends or vacations and hope this will work. I am currently sliding down from 4 to 3.5 mg. fingers crossed I'll get there by mid January. Good luck!

[DorsetLady PMRGCAuk volunteer]

Hi,

Would totally agree with others. Jump from 10mg down to 7.5mg too big. When I got to 10mg -also had GCA - dropped 1mg about every 4 to 5 weeks, using a slow method of tapering not an overnight drop. As I said the taper took about 5 weeks, and if I felt okay I just went straight into the next taper. If I didn't feel okay, then I stayed at that dose for another week, and then started again.

Once I got to 6mg I continued the slow taper but only 0.5mg a time. I found it quite difficult around that level - adrenal glands bit slow at kicking back in.

Around about 3mg I think my GCA went into remission, I certainly felt different at that stage, can't explain precisely what or how but I felt it had gone. However I still continued the slow reduction and finally took my last tablet Sept 2016. Total time from first pains to last tablet - 6 years. So far, so good! But I am still mindful of any symptom I can't pin down to something else.

So yes, it does go into remission, but not as quickly as the doctors believe. And no, there is no other drug than Pred to control it - at the moment at least.

[Caro12line]

Hi. Sorry to hear you are suffering so much. I have GCA and agree with the others.... slow slow slow taper is the way. Everyone is different so listen to your body... for me I follow the "dead slow" method. From 12mg I did it in 1mg drops. And then from 7mg did it in 0.5mg drops... it does take a while longer but for me... no flares and I'm down to 2.5mg going on 2mg. Good luck X

[PMRpro Ambassador]

If you are reducing from 10 to 7.5mg in one go that is very possibly your problem. No reduction should be more than 10% of the current dose and that is 25%. Doctors tell you to do it - but they have never done it themselves with PMR! It may work in other things you need pred tapers for - not for PMR!

I see you have the slow method already:

healthunlocked.com/pmrgcauk...

It explains a lot too - if you don't get it, ask again. HeronNS says "experts will be along" - when it comes to this she is a resident expert! She has used it and adapted a bit to suit her - and that is the idea and the secret. You go SLOWLY but you can add a bit here or there. And then it works for everyone. You might not get to zero for a while - but you will get lower and without problems. When yous tart to get problems you are at your holy Grail: the lowest dose that manages the symptms.

[Margaret1951]

Thank you everyone for your much appreciated advice ! I dropped half mg this morning and guess what , yep muscles a bit sore and GCA a bit dodgy. Zapain again tonight but does clear it !!

I am going to persevere though on 9.5 mg this week and hope my body adjusts to it ok and if so will stay on that dosage for a month ??

I don't mind now how long it takes after reading that it will get better in time.

Just that I felt all alone with my health and now realize others are in the same boat as me !!

It has now made a big difference that I can talk to you all and get good advice and not get shrugged off by the doctor who has never had it !!

I think he gets fed up of me asking when I will go in remission as he has no answer except normally 3 years, then shrugs his shoulders when I tell him I have had it 4 yrs now , because he has no answer. But surely when I have my blood tests every 3 months ( which always come back abnormal ) he needs to find out more, I do like my doctor though)

I am sorry if you all think I am a moaner but I needed to get all this off my chest to someone who understands it all.

Will keep you updated and fingers crossed.

Thank you everyone xxx

[Margaret1951 in reply to Margaret1951]

Ps, has anyone had increased hair on their face due to steroids ???? Only I have !!😳

[PMRpro Ambassador in reply to Margaret1951]

Loads of us! For most people it is fine and fluffy but I had a lovely black beard with one form of steroid - went again when I was switched to a different sort though.

[Margaret1951 in reply to PMRpro]

I have to either pluck them out or use with pain my battery one , ouch lol

[PMRpro Ambassador in reply to Margaret1951]

Your blood tests "always come back abnormal" - I'm assuming you mean your ESR and CRP? If that is the case you shouldn't be trying to reduce until they are stable as low as they will go. They are a sign there is some unmanaged inflammation somewhere.

As for "normally 3 years" - heaven knows where they pick up a figure like that! About a quarter of patients take up to 2 years to get off pred, about half up to 4 to 6 years. The standard German rheumatology textbook says an average of 5 years, so maybe less but also maybe longer. The "2 years" I hear again and again is pretty much a figment of someone's imagination - but it seems to be English-speaking.

[Margaret1951 in reply to PMRpro]

Yes the inflammation , ESR and CRP , but doctor said he is not to worried at the moment as they have been like this and sky high from the off. Even when I have been ok in myself they have been on borderline.

So far today no zapain ! I I was going to but braved it all today so proud of myself.

So maybe another year for me

I think some Doctors have their heads in the clouds with our diseases lol lol

Be nice if someone found a cure for us ! Is this hereditary do you think or have we done something wrong in our previous lives I ask myself.

I also have raynauds and they told me someone way down in the family must of had it, I don't think so , as my 97 year aunty said no one had that as far as she knew, hmmm

[PMRpro Ambassador in reply to Margaret1951]

There are other things besides PMR that will lead to raised ESR and CRP that don't respond to pred entirely - and so the ESR/CRP will remain high. Some of them are associated with Raynauds as a symptom - so are they sure? Particularly since you say that paracetamol and codeine helps the pain - that almost never is the case in "just" PMR. And to say there MUST be a history of Raynaud's in the family is just a tad silly!

There is a genetic background in that they claim that people with Scandinavian genes are more likely to develop PMR - but it isn't the cause as such and it is inherited, it just seems to make them more likely to have a haywire immune system. For example you and dozens of others may experience the other potential triggers but only you get PMR.

[Margaret1951 in reply to PMRpro]

No it's not the raynauds that has been quite good !! and seem to be in remission with it !!

The Zapain ( not over the counter ones ) is very good for my GCA and PMR but I only take them if I get it bad .

I have put on weight with these steroids and just can't shift it !! Any ideas as being diabetic I have been eating fruit to try and shift it with no luck.

[HeronNS in reply to Margaret1951]

Because fruit is high in sugar you may be sabotaging yourself a bit. Found this interesting list, hope the link works:

diabetescarecommunity.ca/di...

[Margaret1951 in reply to HeronNS]

Thank you I have just been on the site so shopping list for tomorrow. My diabetic nurse told me off once as I did not realize a portion of fruit is only what you hold in your curled up hand and not half a tub of fruit !!

[PMRpro Ambassador in reply to Margaret1951]

As Heron says - fruit is really a no-no when trying to cut carbs in general. Quite a few of us have lost a lot of weight/avoided weight gain when on pred by cutting carbs drastically. I eat almost no fruit - it really is a treat.

You would be amazed how quickly the carbs in apples, bananas and grapes mount up! The average apple nowadays is 2 portions of fruit, as is a banana. A medium apple weighing about 150g (and most weigh more than that) has nearly 20g of carbs. Good low carb diets for weight loss tell you to aim for 50g useable carbohydrate - so an apple has probably used nearly half of that before you eat anything else! I eat leafy veg/salads and keep root veg for a treat as well - as soon as I eat more than about that 50g of carb I mentioned I don't lose weight, too much and I gain. It takes a few weeks to get used to cutting the sugary stuff - but I find most fruit too sweet for my taste now.

[DorsetLady PMRGCAuk volunteer in reply to Margaret1951]

Hi Margaret,

Like PMRpro the "2years" line annoys me so!

When my GCA was diagnosed, by ophthalmologist - not Rheumy, he told me I'd be on Pred for at least 2 years, probably longer, and maybe for life.

As I'd been undiagnosed for 18months, lost the sight in one eye, and his prompt action saved the sight in my other one, I guessed he probably knew what he was talking about. Certainly more than the Rheumy I saw 6 months later!

It transpired that I was on them for 4.5yrs - so a total of 6 yrs from first pains to club zero. Which is a much more realistic time, albeit a bit scary, which is why I think most doctors don't have the courage to tell you at the outset. It's a pity, because it gives patients a feeling of despair if they're not off Pred in a short time!

[Margaret1951 in reply to DorsetLady]

Hi again, I had a biopsy done in my head for the TGCA and it took an hour !! While I was awake !! I watched in on u tube the week before ahhhhh so I kept asking the surgeon if he was doing so ans so lol but he was pleased I watched it as he said at least I knew what he was doing, only at the last minute before did I know you can have a stroke while doing it !! He did say he never lost a patient to it yet and that's why he takes his time.

Anyone else had this done ??

By the way still on 9.5 mg and so far so good, still plenty of energy.

I am sorry to hear about your eye sight, do you take drops every night like me because of steroids ?

[DorsetLady PMRGCAuk volunteer in reply to Margaret1951]

Hi Margaret,

Don't take anything for my bad eye. In GCA, the eye itself is not damage, so looking at me you wouldn't know, it's the damage to the optic nerve behind that's the problem. Because it's starved of blood/oxygen when the cells enlarge it just dies off.

My optician explained to me in the early days when I was experiencing difficulties in adjusting to mono sight - it's like a camera, the light is still coming into the aperture, but there's no film in it to enable a picture to be produced. Trouble is, in the beginning the brain is still trying to develop the picture!

As a matter of interest what drops are you on -to prevent raised pressures?

[altywhite in reply to Margaret1951]

Hi, like you I was so grateful when I found this site. It has helped me so much just hearing that other people are in the same situation as you. I thought I was reducing my pred slowly until I came on here.....I had a bit of a flare last month so am now reducing 0.5mg a month and am down to 10mg. If the 0.5 mg a month doesn't work I'll be on to the dead slow tapering method. I may well have to explain all this to rheumatology next month but I am not going to reduce any faster as it just doesn't work for me.

Like you I have come to realise that it will take as long as it takes......how long is a piece of string is the saying. Good luck.

[Margaret1951 in reply to altywhite]

I like yourself have learnt a lot on this site and agree with others the Doctor should not of let me come down from 10mg back to 7.5 so I am staying on 9.5 mg for a month.

Thank God for this forum where we can all learn from one another !!