Hi every one,can you help me please.

[ritter]

Hi saw rheumy last week and he wants to reduce my preds and that is good as I have been on 30mg for the last 3 months but he said to take

25mg for 15 days,then 22/5 for 15 days and so on

,what I would like to know is that reducing to fast,I go back to see him on the 13 of september,most people at the hospital were laughing that my doc has had me on this dose for so long,rheumy said they will treat the symptoms and not the numbers,ESR,s

[polkadotcom]

I think that so far your Rheumy has done well, you might find it is too large a drop but you will only know that if you try, many can take those larger drops at the higher doses.

However if you can get down to 20mg that dose could be a sticking point for you, it does happen, and from 20mg you may very well have to go much more slowly than he seems to be suggesting.

As you have said he is treating the symptoms and not the numbers, he may well be prepared for you not to have reached his target dose by September - you know your body better than anyone else so give it a go.

[ritter]

Hi polkadotcom ,thank you for your reply I seem to be loosing the plot lately I am in so much pain 24/7 and that is definitely having a very bad effect on my brain cells,16months have had GCA and this is the first time to see the rheumy and he to thinks my doc is not keeping an eye on me to leave me on that dose for such a long time,but hopefully things will change now,I to do think it is quite a drop so when i get down to 20mg will have a chat with the rheumy department,thank you for instilling some confidence back into my thoughts very much appreciated ,kind regards ritter.

I do apologize for not been in tough with every 1.but my best wishes are with you all.Anne

[Celtic PMRGCAuk volunteer in reply to ritter]

Hi Anne

I suspect your rheumy kept you on the high dose of 30mgs for so many months in the hope that this would really get on top of the inflammation and enable you to reduce in the way he has suggested. I feel you can only try it and see how you feel at each stage - you have every chance of being successful after remaining on 30mgs for 3 months. Good luck.

[ritter]

Hi thanks Celtic,I do feel really ill but thats nothing new as I have felt ill for months now,it was the Doctor that kept me on the preds for 3 months sorry if i confused you Celtic but i tend to confuse myself now,

what would be a good reduction do you think ?and I will discus it with my Doctor this week,as another reduction is due on Saturday seen as it every 15 days.

Really appreciate your help and advice Celtic,

after been on this site now for months it made me think when he suggested such a drastic drop and this week alone feels dreadful but I am going to give it a go, thanks Celtic Anne

[Celtic PMRGCAuk volunteer]

Hello again Anne

As far as "what would be a good reduction" for you is concerned, I feel that at this stage you can do no better than follow the rheumatologist's advice. We are all so different in both our symptoms and our response to the steroids, not to mention the various other medical conditions we suffer and the treatment involved. The reduction plan he has given you for the next two drops doesn't appear to be too steep at your present dose. The aim is to get you to the lowest dose that controls the symptoms. Once you get to 20mg however, as Polkadot has already said, you might be wise to go more slowly, and I have come across one lady who dropped by just 1mg from that point after encountering problems at that stage previously. By reducing in such small steps, it is easy to see at which point the inflammation is still lurking and quickly return to the previous dose at which you felt comfortable. The lower you get on the dose, the smaller the reduction needs to be and the longer you need to stay at each new dose.

I know the latest thinking is to go by the symptoms rather than the ESR and CRP readings; however, in my case both my rheumatologist and myself were guided by my blood test markers as they always proved a reliable guide to reducing in my case. Plus my blood tests were repeated before each and every reduction at the higher doses - if they were raised, the reduction was postponed.

Have you got a rheumatology nurse helpline at your local hospital - I found that invaluable in the early days of my illness.

I notice that you are in the Middlesbrough area - are you aware that there is a long established support group that meets in that area (PMR GCA North East Support)? You can get further information by emailing [e-mail]. I know they will be of tremendous help and support.

I hope this is of some help to you, Anne, and I really do hope you start to feel better as you reduce the dose. All the best and keep in touch.

[ritter in reply to Celtic]

Hi Celtic,thank you for your help and good advice and please don't worry I will always consult my doc first,I will make inquiries about nurse that would be good if there is anyone.and thank you for the e,mail i will get in touch with them today,

my numbers were really high when in hospital they were 90 then and that was last week so with reduction god knows what they will be,but rheumy seems to think steroids were not working or there is that much inflammation in my back with multiple fractures in spine and embolisms in lungs that the numbers will be raised anyway.

I do agree with you to be very careful when getting down to 20mg and that must be done very carefully,

thanks Celtic for you time,and I will keep in touch.Anne.

[Hidden]

Hi ritter,

It's so long since we have talked at length, but I hope I can help.

What I wonder is, why you are still in pain after so long on 30mg. Is the pain in your head or body or both. If it's head pain, then 30mg is not enough and the dose needs to be increased until GCA is knocked back - 40mg to 60mg is recommended for GCA. Were you not prescribed a higher dose for GCA?

I feel awful saying this to you when I know you feel so ill, but, I really believe that the trick to getting these illnesses under control is in the dosage - the appropriate dose for the illness given for the appropriate length of time, and that differs with each person. If the pain is still bad after a couple of weeks then a higher dose is required. Dropping the dose is just asking for disaster!

Ritter, I really feel for you,

Pats.

[ritter]

Hi Pats lovely to hear from you and I was so sorry to hear of you bad news when you were reducing,Pats its me i,m not very good at explaining things.

16months ago was put on 60mg when diagnosed with GCA,for 3 weeks then the hospital started to reduce over the next 4 months

in the hospital it was a registrar that referred me to Docs and my numbers shot up so doc panic t and started increasing the dose of preds so over the last 12 months have been up and down with preds but mainly up.

.last week was the first time I saw a rheumy doctor and he is starting to treat the symptoms and not the numbers.been in and out of hospital with pain in my back but i do have multiple fractures in spine and march this year was taken into hospital with multiple embolisms,that was scarey Pats so all in all having a bad time at the moment,

All the pain Pats is in the back and I can tell you pats I would rather have a baby every hour than this pain it just will not ease.

Lost Henrietta last week she was only 3/5 the vet did not know what the problem was but she said her liver was like a little solid golf ball she was a cheeky chicken I miss her,still have 2 left.

Thanks for your time Pats and I value all the comment on our forum it so good to be able to share.

keep well pats thanks again ritter Anne..

[Bell4796]

Hi, What you are doing is a good way by going down on your dose slowly, it may seem fast but it is not, i was on 60 at the new year for a few weeks then went to 30 by dropping 10 a week then i went to 10 by going down 2.5 every 5 days, you need to get down as i started on these things 2 years ago and i am 59 years old and due to the damage they have caused by being on to hi a dose i am waiting to have my 2nd hip replacement in 12 weeks as the steroids have made my bones brittle, i had got down to 5m a day after being on methatrexatrate for 12 months and it was working with no side effects until the GCA attack at christmas, still the odd bad day but nothing as bad as it was, once the hips are sorted and i get back on the methatrexate i hope to be having a bit better quality of life, as about the methatrexate, hope you feel better soon, best regards Mick

[ritter]

Thanks Mick for you comments and advice,I am 69 next week and since having this disease the last 16 months I,v aged about 20 years at least,I have GCA it has changed my life completely as it does with everyone.

I do not want to go on Methatrexate and I hope i don't need to ,if i,m very careful with the steroid reduction, I have heard it does you no good what so ever anyway if you Google it Mick you will find this out.

kind Regard Mick hope you continue to do well,.Anne (ritter)