New girl on the block

[Telian]

I was diagnosed initially just with GCA in March 2014. Started on 50mg pred. daily with an instant reduction programme. Today I am on 3mg daily and may not get any lower, not for the lack of trying. I suffer terrible withdrawal symptoms when reducing prednisolone, they immitate the GCA symptoms, headache with visual disturbance (like a waterfall effect) facial numbness and jaw ache (all r/sided). Have been told that I can stay on 3mg but would like to get to 2 at least. Was told on diagnosis some people can go into remission and some stay on a maintenance of 1mg - everyone is different. I have a complex medical history and this doesn't help. I now have PMR and that can be painful but it does ease but have to get up (it wakes me up) to get any relief, which does help. I am told it can go! I know I am under the best health professionals in Southend. This is only a brief outline of my symptoms.

[DorsetLady PMRGCAuk volunteer]

Hi,

You’re under good medical supervision, so if you’re okay at 3mg, which will give you virtually nothing on the side effects issue, then why struggle to get to 2mg?

If you need 3mg at the moment you need 3mg! Doesn’t mean you’ll always need it. There’s no rush, I had GCA for 5&half years, around four is quite usual.

Many go into remission, but not all, so if you have to take a small dose longtime it’s no great shakes, I expect you take other tablets for your other conditions - Pred is no worse than some of those, in some cases it may be better!

When you feel you want to reduce again, try 0.5mg not 1mg, and use a slow taper such as below - it may work then, but if it doesn’t then stick at 3mg.

1st week - Sun & Thurs new dose -Mon, Tues, Wed, Fri, Sat old dose

2nd week - Sun, Tues & Thurs new dose -Mon, Wed, Fri, Sat old dose

3rd week - Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose

4th week - Sun, Tues, Wed, Thurs & Sat new dose -Mon, Fri old dose

5th week - every day new dose

Note: I found usually once I’d completed Week 5, I was able to go straight into a new reduction. Occasionally I did stay on extra week - depended on circumstances.

[Telian in reply to DorsetLady]

Hello

It's interesting to hear another side, my reduction programme was for six week periods. It gave me side effects again (this is a trait with me) so they extended the time scale which did work, the side effects disappeared. Then for some reason I started with the PMR symptoms (something I hadn't experienced before). However instead of going up to 15mg, which is the norm for PMR, they said to stay on 3mg and not to try any further reductions. That was over 12 months ago. The PMR is settling gradually, I still get the GCA symptoms but not as often. I was advised that if I want to try to reduce? then a one day a week reduction for as long as it takes any side effects to disappear I could try, but as you say might have to stay on the 3mg as my head is too sore. As previously mentioned I have other conditions and take a concoction of drugs which might be interfering with things. One thing you have helped me with is the option of the 0.5mg - I did ask if there is a lower dose and was told no, do you cut the 1mg in half?

[DorsetLady PMRGCAuk volunteer in reply to Telian]

Yes, so long as it is the non coated variety it can be cut with a pill cutter - available from most chemists/pharmacies.

However you cannot cut the enteric coated variety, so if you are on them, you may have to change.

Good luck.

[Telian in reply to DorsetLady]

If I decide to reduce I'll certainly consider that option. I do have pill cutters - thanks for that.

Best wishes

[sondya in reply to DorsetLady]

When I told the chemist that my efforts to cut pills was a dismal failure and using chisel and hammer was not the way to go . . . (:-)) she cut the pills for me.

[Telian in reply to sondya]

result there then, will ask my pharmacy

[Hollyseden in reply to sondya]

Chisel and hammer 😂😂

[marigoldb in reply to DorsetLady]

AI am reducing from 5mg prednisolone to 4 mg using the same method. I am in my 3 rd year of pmr. I shall stay on 4 for a month at least, before I try to reduce further.

I had pmr 18 years ago, and it took me 3+ years to get off the prednisolone. But worth it, and had 18 years in remission, so not bad eh?

Best wishes to all reducing x

[Telian in reply to marigoldb]

Wow well done you, the more I hear the more I have hope - as someone that suffers with allergies and reactions to lots of medications I know it will take me longer - my first reductions were 4 weeks then 6 weeks then 8 weeks and give in. So been on 3mg for13 months and still not ready to reduce, been told not to worry so just taking it as it comes as I still get visual disturbance and all the symptoms previously mentioned. I don't have too much time to dwell on myself anyway as I care for my husband.

[EdithWales]

Hi Telian

My GCA started in April 2014 and am now down to 4.5 tapering to 4

I think you are doing very well and Dorset Lady is right, side effects are minimal at such low doses and it really doesn't matter. Do what is comfortable for you and give yourself a pat on the back.

[Telian in reply to EdithWales]

I think my problem was getting cancer 5 months after diagnosis of GCA and two surgeries really upset my progress. However I am optimistic and will never give up or try too hard unnecessarily - noting you are on a higher dose than me, so I am doing well!

[EdithWales in reply to Telian]

Yes you are. What a dreadful think to happen It makes me feel ashamed of my moans

[Telian in reply to EdithWales]

Don't feel ashamed you're doing good, it is an awful illness on it's own and will improve for you as time goes on - in my case - I always say that the cancer has always taken a back seat to the GCA and that is true!

[PMRpro Ambassador]

If you are better on 3 than 2 - then stay there. It is a very low dose and won't do any harm even in the longterm.

I've been on pred for 8 years - and if I ever manage to get to 5mg again without problems I have every intention of staying there!!!!! I did get there some weeks ago - but it didn't last.

[Telian in reply to PMRpro]

It's opened my eyes seeing many of you on higher doses than me, thank you

[Hidden]

Hi There,

I struggle at 3 also, something about that number.

Anyway, 5mg pills are bigger and easier to cut the uncoated ones in half. I use those when at 3.5 (2.5 +1 ) and 2.5.

[Telian]

Thanks Karen, I know we're all individual but it helps to know all these little tips as you don't always think clearly beyond what you already know plus I know my illness well and Professor, my consultant, says to me 'you know what to do'!!