Rhumy visit

[di-bach]

Hi been for fallow up appointment all going well with reduction of prednisone , but have had headach for a couple of weeks now sometimes quite debilitating other times in the background , starting in the back of my head and spreading out later after GP visit put on paracetamol 500 mg , this did nothing another visit added lbuprofen at 400mg some relief from the pain with this. Rhumy thinks could be neck joint problems ! The anti inflammatory seem to do the job at present. I think it's to do with the reduction of prednisone hopefully it will go soon .

[DorsetLady PMRGCAuk volunteer]

Hi di-bach, surprised that GP has put you on ibuprofen along side the Pred - its usually regarded as not wise to use both together, but I guess he's ok with it. If you start to have any stomach problems then go back to him.

Your headaches could well be a knock on effect from your neck and shoulder problems, but it would be wise to monitor them carefully to see if anything triggers them particularly, and certainly if you get any visual problems then go back to GP or Rheumy for advice. From your last post I see you were down to 5mg, are you still on that or have you lowered again, if so, the dose you are on may not be enough to control the inflammation.

Hope it's just a blip and soon remedies itself, but I know it's a worry in the meantime.

[di-bach in reply to DorsetLady]

Hi thanks for the quick reply, Yes you are right I was on 5 mg of prednisone prior to my first vist to the Rhumy over the weeks I have reduced it to 4.5 mg and was looking to reduce to 4 mg by January my next visit to specialist. It doesn't give you any confidence in GP or there prescribing . I was quite stable on the 4.5 mg for six weeks prior to the headach so will remain on that for a while. Thanks for the update

[Celtic PMRGCAuk volunteer]

di-Bach, as DL has said, it isn't wise to take Ibuprofen or the like whilst on steroids as there is a risk of stomach problems. As you feel the problem has arisen since your latest reduction in Pred, then, if it was me, I would prefer to increase the Pred back up slightly to see if that controlled the inflammation rather than add in another risky drug which is contra-indicated with Pred anyway. At the same time remain alert to any problems with your vision, and go straight to A&E if in doubt.

[di-bach in reply to Celtic]

Thanks for the information it would appear the GP is not looking at the drug interaction , I'll stay on the dose of prednisone prior to the headach for a while see how that goes thanks .

[PMRpro Ambassador in reply to di-bach]

If you have neck problems a chat with a physio might be helpful - or (needless to say) I'm going to suggest a few sessions of Bowen therapy. I used to have awful neck problems and they were entirely due to muscle problems - and they are more common alongside PMR.

[di-bach in reply to PMRpro]

Hi Thanks for the quick reply well I have tried the Bowen with a local practitioners, I will try again and stick at it for a while this time a couple of sessions is probably not enough. Just looking for a fix really . Thanks

[piglette in reply to di-bach]

di-bach if you have Bowen you should know if it works within three sessions. If it doesn't it is not for you. I must admit in my case it did not help which I found rather disappointing, but I suppose we are all different.

[PMRpro Ambassador in reply to di-bach]

Yes, piglette is right - if you don't find there is at least some improvement after 3 sessions it isn't worth continuing. That initial improvement may not be enormous and if you have had the problem for a long time then it will be less than if it had been an acute thing. Chronic problems do need longer. I used to combine a session with my osteopath with a few sessions of Bowen - all well separated, not the same week and found that worked better than just one or the other. But you should notice a difference.

[di-bach in reply to PMRpro]

Thanks for the update yes I'll give it a bit longer next time

[trish29 in reply to di-bach]

Hello di-bach ..reading your post and the replies to you I would say go for the Bowen Therapy and stay with it for a while .. I have just had 6 weeks of treatment and I didn't notice a massive difference in the first 3 sessions but I could feel that things were changing painwise in my body.Because I have had PMR for 11 years and tried every trick in the book to reduce on the prednisolone..taken every steroid Sparing agent they gave me ..went to a very good Osteopath that understood PMR and I had light massage, ultrasound to a very painful lower spine and treatment for fluid retention as well, and on a very bad day this Osteopath found me PMR/GCAUK of Surrey and that enabled me to meet up with a lot of people suffering in the same way with this horrible condition. But since having Bowen Therapy I have noticed in the last 2 sessions that my Body isn't so sore , my lower Spine is much easier ..because of a Family Crisis in July/ August I had to go up to 17.05 steroid and I am now getting down to 14 mg , but I am then going to reduce even slower ..I am taking less painkillers and I've always in 11years been advised not to take ibuprofen with prednisolone.. When I had my latest Flare I had what felt like an Arrow in each buttock and that has now gone away ..I am still getting some pain in my upper arms ,shoulders and kneck but it eases with my treatment and each week my Therapist and I discuss what is my PMR pain ..I wish you well and we are so lucky to be able to get such good advice from other sufferers ie PMRpro,Celtic and Dovelady .I can't believe how Gentle the treatment is .Best wishes trish29

[PMRpro Ambassador in reply to trish29]

Oh Trish - I'm so pleased it seems to be helping you and you sound to have got an absolute gem of a therapist!

[di-bach]

Hi trish29 Thanks for the information it seems I didn't give the Bowins a fair go I will return to my therapist and give the treatment a longer period this time. Yes this forum is the best thing ever for me also some very informed people and helped me understand the condition better than the GP has explained take care

[trish29 in reply to di-bach]

Hello again di-bach.. We are all different and maybe the Bowen Therapy doesn't work for everyone but after so many years of taking the heavy medications I felt it was worth a go .I am still learning about how to handle my condition .. My energy levels are slightly better and I'm not quite so moon faced ..I so want to be able to walk again after my muscles have been attacked over the years after taking so many medications ..I have had some strange feelings since starting the Bowen's Therapy ,tingling and shaking within my body. I feel in my heart that I want to continue with my treatment because I have tried for so long to get relief to my lower spine and even injections ordered by my Rheumatologist didn't relieve it but the Bowen has helped that . I still get morning stiffness and a few months ago I had to use a zimmer frame to get myself next door to the Bathroom and just a few weeks ago I was struggling to get on and off the loo.. this is all much easier now even though I have got down about 3mg on the steroids. I mustn't get to cocky because I know how easy flare-ups occur ..I listen to my Therapist and hope that we can carry on down the Healing Path .. I relax when I have the Therapy and usually try to start winding down the day before . It is such a relief to have the pain level come down after frequently crying with pain.

Methotrexate .Azathiaprine .. Leflunomide .Amitriptyline ,you name it I've tried them all for fair amounts of time and nothing has got me down on the steroids .. I hope to stay with my Bowen Therapist for some time .. All the Best to you , trish29

[Celtic PMRGCAuk volunteer in reply to trish29]

Trish, it is so wonderful to hear that something at last appears to be working for you - you so deserve it after all that you have been through, not least with regard to the pain of PMR but also for braving all the different medications for so many years. Long may this improvement continue. You sound so much more positive - keep it up! xx

[trish29 in reply to Celtic]

Good Morning Celtic..lovely to hear from you and that was a Very interesting meeting last week .Yes I am more Positive about myself and I hope our wonderful Rheumatologist agrees with my new route to steroid reduction when I see him next month . Don't get me wrong I still get some bad days but nowhere near like I have in the last few years ,I went 9 hours last night with no painkiller in the night ,that to me is definetly an improvement .. I have the Dentist this morning and hope I don't have to have too

much done ,I know some treatment is necessary but I don't want anything to upset the applecart . It took so long making up my mind about Bowen Therapy that I would like by telling my story that maybe just 1 person gets relief from some of their pain .To me the relief from the pain in my lower spine has made such a difference to my movement and to getting in and out of a chair . I know PMRpro believes in Bowen Therapy and I always read her Posts and replies .. take care Celtic lol trish29

[PMRpro Ambassador in reply to trish29]

I bullied sambuca for a few months before she gave in and contacted Joanne who used to be my therapist! She's as convinced as me now - she'd needed a zimmer to get to the loo in the next room to her bed for about 6 weeks. One session of Bowen and she was already able to walk back to the car without a walking stick! She keeps going back for more but preventatively now...

[trish29 in reply to PMRpro]

Hi PMRpro I'm pleased you bullied Sambucca into going for Bowen Therapy and I hope that it continues to work , and I was exactly the same in not so long ago using my Zimmer frame just to get me to the loo next to my Bedroom and to hold on to it to get me on and off of the loo..at the moment I am using as a clothes airer. Since my fall last year I have been using my Rotator 4 wheeled walker when outside but my Bowen Therapy is taking away my fear of falling again I am getting ready to go for my next treatment later this morning and can't wait to get there and relax.

I have to go very carefully now as I had my Dental appointment yesterday and unfortunately in the near future I have to have a tooth extraction at my local Hospital..I had one tooth removed over a year ago and it went very well but I think I will try not to reduce too much more on the steroids until I've had it done.

I will mention it to my lovely Bowen Therapist this morning and YES she is a Gem. Best wishes. trish29

[Judigardener]

Hello

I was taking ibuprofen with Pred. My Rheumy said if you are taking Omeprazole and take Ibu in the middle of a meal you can take it for awhile and stomach may not suffer.

[PMRpro Ambassador in reply to Judigardener]

And you can take it in the middle of meal and have been on omeprazole for years - and still have a major problem. Better safe than sorry if you have any history of gastric problems or notice anything new. It's a bit late when you are in A&E with a bleed as happened to one friend, not on pred but after 3 doses of ibuprofen ordered by her GP.

[di-bach]

That's very interesting it was about that time I was trying to reduce my prednisone and the symptoms are as you say to a tee, Even the treatment was the same I have tried the Alfuzosin again and after two weeks or so the headach comes back again. thanks for the information.