Did you hear that? that's the sound of ranks closing...!!!

Good morning I have just read your annswer to IssyR and I have a question please. I was on 1.5mg of pred and had a flare, I increased to 7mg which didn't get riid of pain, so increased to 10mg about 5 days ago

can I reduce to 7 now or must I "come down" slowly.

Thank you

Did the 10mg do the job? You can go straight back to 7mg after just a few days of a higher dose - many people are given, say. 10mg pred for a week and just stop and this isn't really any different above about 5mg. You might feel a bit of steroid withdrawal discomfort - so dropping 1mg every couple of days might be more comfortable. A change from 10 to 7mg isn't stopping pred altogether which is dangerous and the main reason for the slow reduction.

Thank you Eileen, I'm still having pain in my right shoulder but have had shoulder pain for years so I don't feel that this is PMR my other pains and the fatigue seem o.k now. I will go down to 1mg from tomorrow.as you suggest. I am  ver grateful for your imput.

We are off on holiday on Sunday and I am just preparing my medication!!!! I need enough for a month, you can just imagine the fun I a having sorting it out I need an abbacus! I keep checking it and re-checking it. Oh where have those days gone when I only needed an asprin...We have just had to go out to buy a bigger "carry on Case" to house the medication. If i don't laugh I will cry........

Maryx

It is the one thing I am almost paranoid about! We have a camper van - I take the toilet bag down with everything in and check it. Then the next time I take something down I look again, and have been known to request OH who drives it to stop halfway to the motorway to be absolutely sure!

Flying's a bigger pain - I daren't put things in the checked baggage! My daughter has 2 x 1 litre plastic bags with just medication for asthma and she came to visit last week for 4 nights, just hand luggage. She only got worried when the girl next to her on the train was off to London for one night - with a full size case AND hand luggage!!!!

Have you ever tried Bowen therapy for the shoulder pain? It helped my top-up shoulder/neck pain that isn't directly PMR but myofascial pain syndrome. They are often found together. Definitely worth a try.

Shoulder pain on one side may be osteoarthritis.  In my case I have bone spurs on my left shoulder which may tear muscle if I move my arm a certain way.  Because of that, last summer I had constant horrid pain in that shoulder, but I got an injection of streroids in it.  That helped almost immediately and enormously and the shoulder has been pretty OK ever since then.  At the same time I had shots in my knees which didn't help at all.

     I don't want to replace that left shoulder- my right shoulder is totally replaced, because replacement usually results in more limited motion, and I need the left shoulder as it is to shut the back door of my hatchback!  That sounds absurd when I write it down.

      This kind of shoulder pain is different from PMR symptoms.  In my case I had little cramps and tender spots all over my upper back and upper arms on both sides.  That struck me as really odd since one shoulder had already been replaced; I was quite puzzled that the cramps were on both sides. Then I was diagnosed with PMR.

Eileen I have checkd out a therapist and will get an appointment as soon as we return from holiday. (I.m still checking my PILLS!!!!!!)

Thank you again for all your sound advice.

Mary

Maybe there'll be a good massage option on holiday - get them to do some gentle work on the shoulder, nothing heroic or it may make the PMR feel worse (massage can release the cytokines that form the hard knots of muscle fibres you can feel in MPS).

Where are you off to? Somewhere nice and warm with dry weather I hope!!!!!!

Yes I.m sure you're right this shoulder pain is different from PMR. Eileen has suggested Bowen Therapy so when we return from holiday I will give it a go I will oof course let you know how it goes. We will be away for a month. so hoping some sunshine will help.

 

We are going to Naples,in Florida.have been before and the weather has been lovely this time of year and its a good place for walking (gentle walks).

Not looking forward to the journey but I know how lucky we are to still be able to do this and perhaps some of my pain will ease in the warmer weather. Will have IPad so will be able to read the posts. Although I have has PMR for 6 years its only lately that I have been on the forum and it has been so helpful. I will try to send you all some sunshine back!

Maryx

Not bothered about sunshine - we have loads of that here in northern Italy - but a few more therms would be pleasant. It is also way too warm for the time of year - but not warm enough yet to sit outside on the balcony      Not that we should be able to in January in a ski resort - but we went up the valley for lunch today and the outside tables were full!

Its been so dark & grey and very windy here but not cold., Daffodils are blooming in the garden, 

Sounds  lovely to go up the valley for lunch. Is there much snow?

Depends how you look at it! There is a few inches on slopes that aren't south-facing - they are nearly bare again! The pistes are mostly OK but are almost entirely based on artificial snow with a topping of natural but it is now 10 days since anywhere had fresh snow, over 2 weeks in some places and even then it was only a few inches. It is a really bizarre winter - there hasn't been much precipitation of any sort for the last 4 months really, nearly 3 months before Christmas with none. It has been well below zero C down here in the valley - but much less cold on the tops except for one week where it was -15C!

It's made an awfy difference Eileen...feel i could be doing with maybe 12mg but definitely the 10mg has improved the pain/stiffness which has given me more energy...i felt like a different person today...just like when i was first prescribed pred

Have a great time Mary xx

Thank you ! perhaps I will come back a new woman ??????

 

If it's worked that much that fast you should feel a lot better after a week. Have you got someone you can take with you who will back you up with how much better you are? Whatever the rights or wrongs - having someone with you really can concentrate the mind of some doctors. It's even more effective sometimes when the partner is male - infuriates me but there it is. I've given you some links to references in the other post I put up yesterday - download them and print them out if you can and go prepared. 

I went into the chemist today for a repeat prescription and told her i was wary taking the alendronic acid as i had no idea how my bones were as i'd never had a scan....she said i'd be better taking it...she didn't understand the 5yr thing but said as long as you take your calcium with it...i said i don't take calcium and she didn't understand that as she says the 2 usually go together....aaaaarrrrggghhh.....

Hi Issy, I decided not to take Alendronic Acid, I only needed it as a prevenative not because I had osteoporosis, I have just read on the patient website  "problems with Alendronic Acid and side effects" having read that I feel that I made the right decision.I will just take the calcichew tablets.

Hope you get your problems sorted next week and I agree with Eileen if you have someone to go with you for support it will help.

Mary

Was that the pharmacist or an assistant? 

You DO need to be on calcium and vit D anyway Issy - studies have shown that taking supplemental calcium and vit D when on steroids can prevent the loss of bone density and it may be quite adequate for many people.. Calcium alone doesn't work as you need vit D to absorb the calcium into the bones. IF you do end up taking AA then they need to monitor your blood calcium levels beforehand because if they are low the AA cannot work at all. 

That was the pharmacist Eileen...she's been really good over the last 2yrs since i was ill in the first place as i was really overwhelmed with the multitude of tablets i had to take especially after i was diagnosed with PMR....told her my take on what's been happening doctor wise and she said the 2nd doctor is really nice (which i always found before) and that i should make another appointment and try to get her to see where i'm coming from...i'll tell you see since a huge part of the pain has gone...that feels doable...the fatigue i've been feeling for months is lifting so a big part of it must have been the pain grinding me down...today i was dancing in the kitchen with my grandkids...teaching them the twist...!! it was amazing...anyway better go to bed...thanks for all your advice Eileen...i'll let you know how i go xxxx