Light at the end of the tunnel

[tangocharlie]

Just thought I'd post some positive news. After a long time (over 4 years yo-yoing between 7.5 and 5) I've now got my Pred dose down to 3.5 and suddenly the weight is starting to shift. Yey, what a morale boost. It's been a tough few years but finally I feel a glimmer of optimism. It was really hard getting from 7.5 to 5 and then 5 to 4.5 but then after that getting to 4 and then 3.5 was easy and I'm feeling OK so hopefully he PMR has gone. Touch wood I'm on a roll. I'm having a Synacthen test next week to check the adrenal glands have started up again after being suppressed so long. To all of you suffering, keep going, PMR will go eventually.

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Great News! 🍀

[Celtic PMRGCAuk volunteer]

Great news tangocharlie and as you are feeling good hopefully that will augur well for the synacthen results also. Good morale boost for all those coming along the tunnel behind you!

[DorsetLady PMRGCAuk volunteer]

Well done, that's great news.

As I've said before I found that 3mg was a real turning point, so let's hope it's the same for you. But do remember that you still need to go slowly, don't spoil things now you've got this far!

[Jackoh]

What great news and such an encouragement. Well done!!!

[Gosingen]

Good to read your lovely news, which brings hope to all of us I'm sure.

[Annodomini]

You're an inspiration, tangocharlie. I too live in the hope that my PMR is, if not completely gone, at least on the way out. I'm now on the way down from 2.5mg to 2mg by the dead slow and nearly stop method, with a pause at 2.5 over Christmas and New Year. Your post has made me smile on a gloomy January morning.

[nuigini]

This news is great to hear. Helps one remain optimistic. Thanks and good luck.

[Avrael]

Hi I'm new to this forum and I'm finding all the info on reducing prednisolone a real eye opener. I'm 66yrs old and I've been on pred just over 10yrs starting on 15mg and struggled to get down to 5mg which I did over the last five years. Over the last 6months I reduced to 4mg then to 3mg by alternating dose every other day from 4mg and 3mg over two weeks then on to 3mg at the beginning of December 2016.

I then decided to set out a schedule to reduce 1mg over two weeks by alternating between 3mg - 2mg then take 2mg for two weeks before reducing to 2mg and 1mg over the next fortnight etc.. At present I'm still on 3mg and do have increased pain in my back and buttocks and left leg which is eased by voltrol gel. I don't know if PMR is still present or if it's Fibromyalgia but I'm determined to get off steroids if at all possible.

I have a doctors appointment at the end of January (booked a month ago) to discuss all of this and I'm hoping to get blood test that will be clear. Then I will know my pain is probably Fibromyalgia along with withdrawal symptoms of the prednisolone. I do believe it can take a while for the body to adjust and I'm hoping I can cope with any rise in pain levels short term to final be steroid free. 10yrs of taking steroids and allendronic acid, calcium and mepradec is too much. I'm hoping this year will see the back of them all. By the way, having got down to 3mg I feel my mind is a little clearer and my body not as heavy especially in the mornings. Sorry for going on, this is the first time I've been able to communicate this to anyone that may understand. Thank you for reading this.

[54jen]

I too am beginning to see a light at the end of the tunnel. After 7 years and a classic history of getting stuck at 10mg, 7mg, 5mg and 3.5mg, I am now reducing to 2.5mg using the DSNS method. Good luck everyone!

[PMRpro Ambassador]

If you feel OK at 3.5mg then your adrenal glands are almost certainly working again and topping up the amount of corticosteroid you need! If they weren't - you would be so tired PMR would look a doddle - and have a load of other symptoms!

[tangocharlie in reply to PMRpro]

I'm tired all the time in fact totally exhausted but put that down to sleep apnoea and side effects of steroids. I've got appointments with an endocrinologist and my rheumatologist in the next few weeks to check all is fine. I'm optimistic I'll finally be off steroids in a few months.

[tangocharlie]

PS the dead slow/tortoise method of reduction never worked for me even though I tried it diligently several times over 2 years. In the end I tried alternative days 5 and 4.5 then eventually after about a month, one day 5 two days 4.5, one day 5 two days 4.5 for another couple of weeks then just stayed on 4.5 and even though I felt a bit rough for a couple of days after that it was fine. From there to 4 by the same alternating method and this time no protest from my body at all. Doing 0.5 reduction a month by this method and now going from 3.5-3. It's been plain sailing after finally breaking the 5 down to 4.5 barrier. Touch wood it continues. Thanks for all your messages of support everybody.

[lesley2015]

So very pleased for you, its really lovely to hear there is a light at the end of the tunnel. Still on 10mgs so still struggling with weight, moon face etc - 19 months in.

I hope you are soon pred free ~ best wishes

[tangocharlie]

Slight technical hitch .... postural hypotension aka blood pressure normal when sitting but drops when I'm upright. Had to go back up slghtly to 3.5 but think that's sorted it. Weight loss seems to have really slowed. But still optimistic and keeping my double chins up

[PMRpro Ambassador in reply to tangocharlie]

Probably lazy adrenal function - it will probably come back if you go slowly enough.