On Pred now

[Toobusyforthis]

Hi all ...finally I have a confirmed diagnosis of PMR....saw my specialist last night , as my body responded so well to the steroid injection she has now put me on Prednisone starting at 12.5 mg a day for 4 weeks then tapering down to 10mg for 4 weeks then 8 mg etc etc , so here we go with much trepidation but it’s the only way forward I hear! Has anyone tried the Homeopathic way? Someone suggested I should try? Oh also she has prescribed something for my tummy??? What’s that for?? Thankyou for your help ...kind regards

[squashie]

When the UK wakes up you will get more detailed responses.Have a good read of past posts regarding decreasing dosage. I suspect the regimen suggested for you will be too fast - general rule of thumb is no more than 10% reduction at any one time. The stomach medication is to prevent the pred causing stomach problems. Many experience it - I, and others, don't seem to have a problem. There is also in the UK an option for enteric coated pred, which removes the need for other stomach meds. I understand the NHS seems to be reluctant to prescribe this, despite the total cost of non coated pred and stomach protection is more than the enteric coated!

Welcome to the club - and good luck on your PMR journey.

[Toobusyforthis in reply to squashie]

Thanks for your reply ..I’ll look into getting the coated tabs , and I’ll take on board the tapering bit . Kind regards

[Noosat in reply to squashie]

I have a small gastric ulcer.. I watch my diet for acid producing items = drink one cup of coffee in the morning, and avoid citrus fruits especially. I make sure I eat at about the time I take prednisone and have had no problem

[Kendrew]

Hi Toobusyforthis,It must be a relief to finally have a firm diagnosis and feel able to move forward with things.Unfortunately, PMR itself can only successfully be treated with steroids. They are the only medication that can successfully and consistently reduce the inflammation in the body that causes the pain and stiffness. However, homeopathic remedies are often successfully used to alleviate many of the symptoms and side- effects that occur around the main condition. (It's very important to always eliminate any contraindications with other meds first before starting any homeopathic treatments though.)

Regarding the 'something for your tummy...I suspect you've been prescribed something like omeprazole/lansaprozole/famotidine.... these are all PPI's (proton pump inhibitors).....a medication who's main action is a profound and prolonged reduction of stomach acid production. Steroids, like many tablets, can irritate the stomach and gut and can cause ulceration of the lining so it's important to protect it.

I personally have not required PPI's so far but I was initially prescribed them. I refused as they also can come with unpleasant side effects. Also, I'm not one for taking medication that I don't need so I decided that if I started to experience problems with my gut at a later date, then I would reconsider my decision. I currently have gastro-resistant tablets, and take them after a good breakfast (ie. on a full stomach) and two years down the line I still haven't required PPI's! I know from this forum that others simply have a few spoonfuls of natural yogurt prior to taking their tablets...just to line their stomach and this seems to work equally well.

We are all individuals however, and you must decide for yourself whether you take the PPI's or not(if that's what they are?) It might be sensible to have another chat with your GP about this medication for your tummy and then you can make a more informed decision.

One thing I would strongly advise, is that you learn everything you can about your condition and medications though. Medical professionals are often far too ready to prescribe medications we might not necessarily need, as I for one have discovered. If I hadn't said "No" on a few occasions I would now be taking at least 2 other medications on top of the 5 I already take! My decisions were the correct ones for me as I've not needed either so far!

There are many people more knowledgeable than myself who I'm sure will be along to advise you also.....I'm just relating my own experience and information I've learnt myself from here. Hope that's helpful and I wish you good luck with your 'journey'.

[Toobusyforthis in reply to Kendrew]

Thankyou so much I’ll keep you updated as to how I get on x

[DorsetLady PMRGCAuk volunteer]

Hi,

As others have said, tapering regime may be a tad optimistic- and 12,5mg is the lowest recommended starting dose for PMR so just make it working before you even think of reducing.

Your Rheumy obviously has a slightly different approach than some, but if it works -fine.

12.5-10mg may work, but after that usual recommendation is 1mg every 4-8 weeks depending on patient....so you can see 2mg every 4 weeks is very quick.

I sent you a link in your first post, please read it through again now you have a diagnosis.

Homeopathy may help the “add ons” to PMR, but doubt it will do anything much for the underlying illness itself.

[Toobusyforthis in reply to DorsetLady]

Thankyou so much , I’ll read it again , kind regards x

[PMRpro Ambassador]

In the past we have had homeopathic practitioners on the forum - who happily accepted taking pred. They DID use the homeopathic remedies to help deal with the adverse effects and other things. But emphatically NOT the PMR/GCA.

I would counsel keeping an open mind about that reduction approach - 12.5mg is the bottom of the range for managing PMR, it may not be enough to clear the existing inflammation out before you are to reduce to 10mg. The recommendations from the experts in tapering for PMR are that any reduction step should be no more than 10% of the current dose but people do often manage 2.5mg steps down to 10mg. However - from 10mg the steps should be 1mg per month AT MOST and trying to go faster frequently results in a flare.

Many doctors are convinced that gastric irritation is inevitable with taking pred. Like everything else, no it isn't and in fact the PPI, especially omeprazole, can cause gastric problems in about a third of patients! One dose and my husband practically erupts with bloating and wind! So if you do think you need it (taking pred in the middle of a solid breakfast or taking it with yoghurt works just as well for many) and develop such problems, don't blame the pred. Famotidine has been mentioned - it isn;t a PPI, it is an H2 antagonist and works with a different mechanism to reduce stomach acid so it has different side effects. Long term use of PPIs is associated with loss of bone density - I really do not understand why they are so keen to hand out 2 medications that combined will probably make that effect even worse! Have you been sent for a dexascan to see the condition of your bones as a baseline?

[Toobusyforthis in reply to PMRpro]

No she hasn’t mentioned at Dexascan , I think I’ll forget the tummy tablets now and try the yoghurt first she said I will feel ill again when tapering fir a few days but to bear with it xxx

[SheffieldJane]

That is a modest start dose so if your relief is not good enough, let your doctor know. Listen to your body when tapering, there is no one size fits all. Is it Omeprazole or similar that you’ve been given? Not everybody gets along with it, the drug can produce unpleasant side effects. Prednisalone is harsh on the digestive system and should always be taken with thick yoghurt or similar. I moved on to gastric resistant Prednisalone which suits me really well. I didn’t get along with Omeprazole, it can effect the bones. Cumulatively, I began to experience unpleasant gastric symptoms after 4 years of Pred.

[Toobusyforthis in reply to SheffieldJane]

Oh gosh really..? Okay maybe I’ll try the yoghurt first , she said I will feel ill again when tapering for a few days but to bear with it 🤷‍♀️ Thankyou xx

[HeronNS in reply to Toobusyforthis]

If you use a slow taper method such as developed by patients (click on the list of pinned posts on our page to find the post about taper plans) you should NOT feel ill for a few days. The slow taper plans have two very useful benefits. One is you are tapering slowly enough to more easily find the lowest best dose which will still relieve the symptoms as much as, or close to, the initial relief (which should be no less than 70% by the way). The other is it helps to avoid most if not all "pred withdrawal" symptoms which are so like PMR it can be hard to tell the difference. Rule of thumb, which is helpful but not necessarily a firm rule, pred withdrawal happens very quickly and eases up (this is what your doctor is warning you about) and PMR symptoms start a little more slowly and tend to build up over a few days (why you need time at a dose to find out).

My plan, which I've always thought was particularly good when I compare with what other patients have experienced, went like this: Start at 15 mg for one week, the test. Excellent response so stayed at 15 for a further four weeks. At that point my doctor had told me to reduce by 1 mg a week, but to stop tapering if I felt symptoms again. In fact this worked well for me (some might find it too fast) until I got to 9 mg when the pain started to build up again. With the help of advice on a PMR forum I understood I could go back to 10 mg which I did for a few weeks, then I started using the plan called "Dead Slow Nearly Stop" (DSNS) which I adhered to until eventually I got to 2 mg where I have stopped with the occasional taper lower and the occasional increase, for over four years. I reached 2 mg about 14 months into this adventure, which is pretty good. Even getting to 5 was a major milestone!

I did check with my doctor, "What do you think of this taper", and she was very much on board with my trying it, which made me feel better, but I'd have used it anyway!

[Toobusyforthis in reply to HeronNS]

Thankyou ..this is so daunting...I’ll give it a go as your way seems much easier to follow! Thanks again ..I’ll keep you posted! Xx

[HeronNS in reply to Toobusyforthis]

Just bear in mind that when I started my taper I was really 100% better and had been on that first dose for over a month and it was 15 mg. You may want to be a bit less enthusiastic with weekly 1 mg at the beginning, depending how you feel. From 12.5 it might be wise to take more time. In the end we get there. Also, more to the point, the slow taper seems slower, but it gets us to where the doctor wants us in very close to the same time (if the doc is being sensible) with greater likelihood of success. "It isn't slow if it works."

[diana1998 in reply to HeronNS]

Gosh, you've done well. I always felt out of sorts for 5 days when dropping. Then fine. Now I'm under 5mg I don't get these symptoms any more thankfully and drops of 0.5mg have become easier. But I do stay on new dose for 8 weeks every time. No pain.

[HeronNS]

I am sorry you've had to join this journey, but here is the best place for support and even companionship in what can be rather a lonely disease. I take note of your name. "Too busy for this". If there is one thing which seems common to nearly everyone embarking on a PMR journey it is the life we have led has for whatever reason been an active, busy and often stressful one. A lesson we have to learn is how to let some things go, pick our battles, leave the housework for another day, delegate, find time for rest. Early days on pred may lead to surge in energy. Use that energy to do pleasant things, not to work harder or clean out the garage! And my rule of thumb as time went on was to try as much as possible to balance activity (doesn't have to be physical activity, can be social interaction or sedentary concentration on something which can come with their own stress even if enjoyable) with an equal time of rest. It is worth trying to find the balance. I had a bit of trouble letting go of some things and also convincing my friends I was no longer quite the person I used to be when it came to activities, but it has been essential for my recovery and maintenance of that recovery.

Me: Diagnosed 2015 age 68 after over a year of symtoms. Still on low dose pred.

[Toobusyforthis in reply to HeronNS]

Thankyou so much for the info ..it does seem people who do not or have not heard of PMR are a little in denial it even exists! Just because we look the same as we did ( well’ so far but may be not soon lol ) thanks again I am taking this all on and digesting as much as poss xx

[piglette]

I do hope 12.5mg works OK, if it doesn’t do tell your doctor as the normal starting range is 12.5-25mg. Also she is being very aggressive in her reduction rate. Personally I could manage only 0.5mg under the 10mg mark although some people are tougher than me and go for 1mg. By waiting 4 weeks between reductions you should know if it is a step too far or not. You can take the enteric coated version of the steroids which means you don’t need a PPI for your tummy.

I had a couple of friends who were homeopaths who were horrified I was going on steroids and not using them. I then came across another homeopath who had PMR and tried homeopathic methods for three months and then gave in to the steroids!

[Toobusyforthis in reply to piglette]

Thankyou for your reply I’m learning everyday ..I feel so lucky I have found this group of such helpful people xx

[Bridge31]

I poke the Pred into the middle of a big spoonful of Greek Yogurt and swallow the lot. If you are taking uncoated Pred then that way you never catch that unpleasant taste which sometimes happens swallowing with water.

[Toobusyforthis in reply to Bridge31]

Good idea...thanks x

[PuttyPenguin]

Hi Toobusy! Welcome to the site! You've absolutely done the right thing by joining this group as you'll probably find -as I did - that the rheumatologists don't tell you anything! Do your own research - I found Kate Gilbert's book on PMR&GCA to be a very good starting point. Do remember that every 'body' is different and you have to follow your own path through this. I wish you well.

[Toobusyforthis in reply to PuttyPenguin]

Thankyou...ordered the book it’s on its way xx