Jeanmh

[Jeanmh]

Hello can anyone tell me how often should you have blood test done not had one done for two months .I was diagnosed with GCA end of October 2016 was put on 60 m prendisalone I am now down to 8 m .Not been to well since the last drop down my Dr wants me off them by Christmas is that possible .Since been diagnosed I have had to deal with a fractured spine still can't walk right and now aprolapse sorry to moan when does it all end .I don't know but was told it could have been the high dose of steroids could have caused some of these problems as I was on 60 m 10 weeks before drop x

[Celtic PMRGCAuk volunteer]

Jean, high steroid doses can certainly lead to fractures due to their potential bone thinning effect, and being left on 60mg for 10 weeks does sound somewhat excessive. The recommendation is for patients to be started on the highest dose necessary that controls the inflammation/symptoms and then to seek the lowest dose that still controls it.

You have certainly reduced at a very fast rate from 60mg if you are on 8mg at present. I can understand the reason behind your doctor's wish for you to be off steroids but, unfortunately, none of us, including doctors, can forecast when each of us will be completely free of inflammation/in remission and therefore off treatment. The important point here is to protect your eyesight. The fact that you are feeling so unwell since your last drop in dose may mean that you need to return at least to your previous dose for a while to see if you feel any improvement. However, you haven't said what your actual symptoms are - for instance do they appear to be symptoms of GCA such as you experienced prior to commencement of treatment?

Never worry about, or apologise for, "moaning", especially among those of us here who understand much of what you are going through, on top of which you have both a fractured spine and a prolapse to deal with.

Perhaps you would be wise to visit a good optician or ophthalmologist, if you haven't already done so, who can at least look at the back of your eyes for any sign of a halo effect or swelling of the optic disc. This will at least give you reassurance on the GCA front.

[Jeanmh in reply to Celtic]

Dear Celtic every thing you have said is right I don't want to bore you all on this great site I have wrote on Dorset Lady reply about how it all happen so please don't think I'm been ignorant not writing it all again to you .What you said about the Preds causing the problems that is what my Dr said hence the haste to get me down but its true what you say our bodies don't listen .Thank you for caring and replying to my mail

[SheffieldJane]

I do recognise those despairing feelings Jeanmh. As if a whole chain reaction of horrors has been triggered by this condition. Then to feel trapped on a harmful drug - the only thing that relieves the pain. I fail to see the connection between the two conditions you have and Prednisalone to be honest, unless the fracture occurred through Osteoporosis.but I am not a doctor. I would be inclined to return to the Pred dose I was last comfortable at to be honest. Unchecked inflammation is also harmful. Blood tests do not tell the whole story. I have had them half a dozen times since diagnosis in May 2016 but I volunteered for a research programme so I get a lot of monitoring. The results do not equate with how I feel, especially now they are normal and I am not. Have you had a recent DEXA scan to look at your bone density? What kind of prolapse has occurred?

Let us know how you go. You have achieve a pretty steep drop in dosage in a relatively short time. I started on 20mg for PMR and am now flirting with 6 mgs with wavering confidence but a lot of encouragement from my Rheumie whom I trust implicitly.

[Jeanmh in reply to SheffieldJane]

Thank you Sheffield Jane for your reply to my mail yes you are right it is an awful drug and it's the only one that can help us .Im just glad there are people like you and everyone on this site that when we need help there is always some kind person to listen to you. I have put a big reply on Dorset Lady explaining how things have happened and some progress

[DorsetLady PMRGCAuk volunteer]

Hi jeanmh,

From my own experience in early days of Pred I had bloods tested on a monthly basis, and that, plus the lack of any symptoms, dictated whether I reduced my dose or not. As I got to much lower doses (under 10mg) my tests were done every 2 months.

If you started on 60mg in Dec 2016 and are now down to 8mg no wonder you are feeling unwell - much too fast a reduction. And if your doctor wants you off them by this Christmas then he has very little knowledge of GCA.

It can take up to 6 months for the Pred to really get a grip of the GCA initially - I guess that was his reasoning for keeping you at 60mg for 10 weeks (that in itself is unusual).

GCA can last from anything from 2-6 years (average around 4), so you can see yours is still active, and you've obviously gone below the level of Pred you need to control the inflammation caused by the underlying GCA.

Your other problems may have been caused by Pred, were you prescribed any other medication to help your bones?

Think you need to get a second opinion on your treatment.

[Jeanmh in reply to DorsetLady]

Hello thank you for your help the reason I was on a very high dose of preds was to save My eyesight when GCA was diagnosed at the end of October the inflammation was so high it temporarily cut the blood supply to my eyes that is why I was kept on the high dose so long. It was December when my spine fractured and now I've had a prolapse which I now need an hysterectomy been advised not to have it done till I'm of most of the meds I am on they are going to try something else just hope it works I think that is why my Dr wants me down fast but really hard going since the last drop.With pain and terrible fatigue sleeping more than awake.Spoke to my Dr and having a blood test on Wednesday before the next pred drop she said I may have to go up if my markers aren't right I have had a Dexa scan and it's spondylosis in my spine I am on Alendronic Acid tablet once a week and two D cal tablets a day morphine and preds so hopefully things should get better.Thank You Dorset Lady I can relate to all you say

[PMRpro Ambassador]

Your doctor may want you off pred - but he isn't in charge. You have reduced at a tremendous rate to be at 8mg now - but that doesn't mean it will continue.

You say you feel unwell - what sort of unwell?

[Jeanmh in reply to PMRpro]

Hello every time I have come down for 7 to 8 days I just wasn't right in myself was in a lot of pain But I never gave in because after a week I would start to feel ok again .This time since my last drop to 8 m three weeks ago I have had pain and horrendous fatigue slept more than I have been awake . Been in touch with my Dr and she thinks I may have to go up with my preds hopefully will start to pick up again

[DorsetLady PMRGCAuk volunteer in reply to Jeanmh]

Hi again,

Would say that pains on earlier reductions were definitely steroid withdrawal symptoms, but this last round certain indicates that you have gone below the level of Pred you actually need.

I appreciate you have lots of other issues as well, and that doctors want you to reduce Pred asap, but as we're always saying GCA doesn't do want the doctors want it to! If you need a certain level of Pred, you need it. Full stop, no other option. Unfortunately.

If they try and get you off Pred whilst the GCA is still active, and yours most certainly is, all that will happen is that the inflammation caused by the GCA will just build up again, and you'll end up in more pain, and your in time your eyesight could be but at risk again.

My GCA took 5.5yrs from start to finish, so I'm afraid you've got some way to go!

I wish you the best.

[Jeanmh in reply to DorsetLady]

Thank you Dorset lady for your reply it helps me understand why its a long journey

[PMRpro Ambassador in reply to Jeanmh]

All that DL says!

Not to mention having to go back to a much higher dose - so negating any perceived benefits of getting the dose down quickly!

[Sho-Sho]

I think you have reduced very, very quickly.

I was diagnosed with GCA a year ago starting with 60mg. I am now on 13mg with my Rheumatologist wanting to get me down to about 7mg by the end of the second year, and then off by end of third year. They say that on average GCA will take two to three years before it burns itself out - so v. Important not to get the pred too low or it won't keep the inflammation under control.

I have a great doctor but he has no experience of GCA which is why I think it vital to see a Rheumatologist.

Good luck.

[Jeanmh in reply to Sho-Sho]

Thank you Sho-Sho yes I agree with you it is very quick but the preds are causing me a lot of other problems .it's not been easy getting to 8m I've managed it but you are right it does get harder as you get to the lower numbers . It is a long rocky road.Only seen a Rheumatologist once in October

[christine2715]

I started on 60 mg of Pred 18 months ago and until recently had bloods every two weeks and now once a month. I am down to 10 mg but struggling. I always have poor blood results so maybe that is why I have regular bloods - at the moment 77 ESR and 51 CPR

[PMRpro Ambassador in reply to christine2715]

I don't know who your doctor is - but I really think you need another opinion. Those are very high inflammatory markers which suggest the GCA is getting the upper hand. I do understand why a doctor wants you off pred - but if it is at the risk of your GCA flaring I think it is rather cavalier.

[Seabyrd]

It has taken me 18mths at least to go from 40mg down to 2.5mg along with we think the help of Orencia infusions...it's fine for your Dr to "want" you off prednisone by Christmas... that is my dream to go from 2.5mg to 0mg by Christmas...however not at the cost of having to go way back up if I have a flare... to me the slow slow reduction has been great I have never had a flare but I have had some warnings and NEVER reduced when I have them will stay on that dose for as long as it takes to feel comfortable with it...sometimes that has been months.... I probably could have reduced faster but decided it wasn't worth the possibility of having to go way back up to get relief if I had a flare up.... then start all over again.

Take your time and listen to your body and best wishes to you.

[Jeanmh in reply to Seabyrd]

Thank you seabyrd I can see you are fighting it the same as me but after not been well for four weeks now it is getting me down and if my blood test don't come back ok this time I'm going to give in and go back to the the last number of preds I was on before this all kicked off this time .Thanks to a lot of people on this site I have had some really great advice .And its true you have to listen to your body best wishes

[maria40]

My GP says 3 monthly blood tests are recommended for GCA. Sorry you've been having so many painful problems. I would resist your doctor's hurrying you down so quickly.

[Jeanmh in reply to maria40]

Thank you maria40 for your advice much appreciated