Was doing great till reducing to 2 mg - help:)

If you have a busy week planned - NEVER, EVER attempt a reduction! 

I don't really limit what I do at 4mg - it is more what I can manage after a few years or not being able to do stuff. If you want to do the Camino you will possibly do it better on a very low dose than without. The taking it easy bit we mean to say "for goodness sake don't over do it"! 

You would probably be surprised to know how many PMR people were active and walked, climbed, cycled pre-PMR. With luck and not being silly you WILL manage it sometime. I'd lay odds though that you'll manage it sooner by not forcing a reduction.

Will absolutely take it easy and reduce nice and slowly.  Thanks again and good health to all

Don't forget when you come off steroids, it can still take a year or so for our bodies to get back to normal, so still  give it lots of TLC, including a good diet - Manuka honey is good for the immune system.

So glad you are off the pred.  You are an inspiration and enjoy having your life back.

Thank you for reminding me about the time it takes to get back to "normal". It is so hard when you start feeling good but I guess we should all take the best care of our bodies we can. 

When you say come down half mg  every two weeks - do you mean literally one half mg every two weeks.  I think I've probablycomeoff too quickly - I reduced 3 2  1 over 3 months and now 3 months later it's all coming back.  Really appreciating all the knowledg and sharing

There are two things to bear in mind here. It isn't just reducing slowly, in small steps and not too fast - if you go too fast in that sense you are likely to experience steroid withdrawal pain which is very similar to PMR pain and often panics people into increasing their dose again. We've developed reduction schemes where you spread any reduction over weeks at a time so the body hardly notices. And at any point of PMR a reduction of dose should never be more than 10% of the current dose - which basically means not more than 1mg at a time for convenience (if you start at 15mg, 10% is 1.5. Why cut tablets, use 1mg)

The second - and probably more important aspect is that you are NOT necessarily aiming for zero. I know the thought of not taking pred is very attractive but if the underlying autoimmune disorder that is the cause of the symptoms we know as PMR (PMR is not the illness, it is the signs of the illness) is still active you need some pred. And even here there are two sides to it. If you reduce too often you may miss the warning signs that this new lower dose isn't enough to contain the inflammation and keep you symptom-free and comfortable. Even half every 2 weeks may be doing just that - you haven't let your body get used to that dose and if it is just slightly too low then the increasing inflammation won't have reached the tipping point that you feel. You feel great for a couple of months - and then it hits. Big disappointment and back to at least 5mg to control the inflammation and start all over to find the lower dose that is right.

If you reduce in biggish steps you easily miss that correct lower dose. Bumping down quickly means you don't notice that you are fine at maybe 2mg on 1 day in 3 but 2mg on alternate days is a bit too low. And yes, it can be that fine a dividing line. 

I'm not just saying all this off the top of my head - it is the result of collecting experiences from literally hundreds of contacts on 3 different PMR forums. We realised a few years ago that the speed many doctors told patients to reduce - often 2.5mg at a time, even 5mg at a time - was causing problems for many patients. At first we suggested 1mg at a time and it worked far better. Then a few of us tried spreading that drop over a few weeks - going from every day old dose to every day new dose took us up to 7 weeks. Doing that we got far lower than we had ever managed before. Often a sticking point is 10mg, it had been for all of us who worked out these very slow schemes, but we got to 5 with no problems. Now we are slowing down, resting a few weeks between each 1/2mg spread over weeks to see if we are still symptom-free. Maybe it has gone altogether - but maybe it hasn't and taking 2 or 3mg for a few months isn't going to add greatly to your total dose which is the significant concept. It is better than what has happened and needing to backtrack.

Thank you so much. Eileen,  I only joined the forum yesterday and I feel so much more positive just hearing from other people with same problems - I shall probably have to go back on the steroids but I think I shall have more understanding of what to look for when coming down the dosage 

 

If you get back onto the pred quickly you may well find that 5mg is enough, certainly 10mg. You also know you were absolutely fine at 5mg so can probably reduce relatively quickly. It is common for doctors to tell patients to "add 5mg" to the current dose in the case of a flare - it might work and it would save you starting all over again. There is no guarantee, "second" doses of PMR often don't bear much resemblance to the first and flares can also be a bit unpredictable. But I think it would be worth a try.

Hi Barb, I was reducing 1mg monthly from the 10mg point, having come down from a 40mg starting dose (PMR and GCA).  All went well until I reached 5mg when I noticed the pain increasing.  However, I continued the 1mg a month reductions as had been directed by my rheumy at a previous appointment (it was some years ago and before I knew better!) but when I got to the 3mg dose I knew that I seemed to be going back to square one and facing being bedbound again.  Rheumy then increased me back to 10 with a staged reduction to 7.5 and 5mgs (the point where things had started to go pear-shaped) and then kept me there for 6-7 months.  That was obviously the point where the steroids had previously started losing control of the inflammation so became a sort of maintenance dose which proved highly successful for me.  I was then advised to again continue reductions at 1mg a month.  However,  having read of a Swedish gentleman's success after very slowly tapering from the 5mg dose which had previously been a constant sticking point for him I decided to try something similar but going even more slowly in half mg decrements on one day of the first week, two of the second, etc.  I may not have needed to go this slowly but I wasn't taking any chances after the previous experience with a severe flare.  A snail's pace but it worked and I came off steroids two years ago.

You haven't said how long you were on steroids for, but as you are within 3 months of stopping the treatment, perhaps, as Eileen has suggested, a starting dose of 10mg may be sufficient for you, in which case, if you can remember experiencing any returning pain at any dose along your previous reduction programme, then a dose above that should be your maintenance dose for a whle.  Good luck and do let us know how you get on.

Thanks for your input.  The problem is that I will have been off the steroids for 3 months on the 21st August andI won't be seeing my doc until 21st August ( he s away on hols).  I m getting the stiffness in the jaw which is really worrying me and I wonder whether I should see another doctor at our surgery before then.  The temporal arthritis really scares me.

Hello again Barb, if the jaw "stiffness" is only on chewing then yes see another GP asap, if necessary asking for immediate referral to a rheumatologist.  Jaw pain on chewing was one of my symptoms before diagnosis.  If meanwhile you experience any head/eye pain or problems with your vision, such as blurring, then A&E is the place to go. 

Yes - don't wait for your GP to come back, ask for an emergency appointment. Like MrsO I had jaw pain when chewing in the early days of PMR but I never had any other lasting GCA symptoms and was put on 15mg and it dealt with it all. And as she says - any extra GCA signs or symptoms, straight to A&E and tell them your history.

Well I've been to see doctor and he has put me on a 5 mg dose predisolon but what really puzzles me that I had a blood test before I saw him and my ESRcount was down 10 points to 27 whereas it had been37 a few weeks ago. The doctor said that would be quite normal considering age etc.

After 3 days I canfeel an easing of the stiffness and the ache in the jaw has gone I'm hoping the other symptoms will disappear as well.  But I am still perplexed how I cannot be showing the inflammation in my Blood Count.  Any ideas?

 

 

ESR is very non-specific. It can be raised if you have a cold and also varies from day to day - it is only a very rough guide.

That level of ESR (27) is within the normal range - but a normal range is the different levels found in a normal healthy population. It doesn't mean that it is YOUR normal level. My normal level is 4 - it would be VERY high at 27. It all depends what you normal without PMR really is. Some people will show a raised level at the beginning of PMR but then later it doesn't go back up in a flare - no one knows why, it just is that way. Some people never get a raised value however poorly they are. That's biology!

If the symptoms are easing that is good - hopefully that will be enough to get you back to your comfort zone and then you can try very small reductions - but not yet.

What dose Manuka honey do for you ? I found it here in the US but it cost    $ 22,00 a jar. 

Janice, Manuka honey has a whole host of benefits, including helping to boost our immune systems, easing any esophaugs/gastric problems etc. A special irradiated version is also now used by our National Health Service to treat such conditions as leg ulcers   Yes it is very expensive, especially when you buy the Manukas with UMF on the jars (Unique Manuka Factor) which guarantees the antibacterial activity of the honey inside.  You need at least UMF 10+ - I alternate between 10+ and 15+.  The higher the Factor, the higher the price.  We have a health shop chain here in the UK who run special offers at certain times (eg "buy one, get one half price) and I always stock up then.

Thank you I will try it and see if it helps me.