Tapering problems

[kathleen18]

I have been reducing from 7.5mgs to 7mgs very very slowly and have now arrived there. However I feel extremely tired all the time and this affects my eye muscles making them very heavy and uncomfortable, and this makes doing any work or reading difficult. I thought I had been doing well but now I wonder whether this is caused by the reduced dose and whether I would feel better if I increased the dose up a bit. I have had to give up most of my activities which make life worthwhile. Any ideas?

[SnazzyD]

Hello, I felt awful around this Mark and even thought I might be getting PMR on top of my GCA. I was tired, shakey, emotional and couldn’t tolerate much stress at all. It felt like I didn’t have enough Pred in the tank for the day’s events but my adrenals were still asleep because the dose was still too high. My Endocrinologist agreed. I pushed through and it improved hugely by 5mg and the evening wobblies stopped at about 4mg. I feel much better now. I still get achey and tired with withdrawal but a Paracetamol sees to that.

[BonnyQuine in reply to SnazzyD]

Thanks for the encouragement.

I believe a lot of us struggle around this mark, and it's good to hear of eventual improvement.

Onwards with hope.

[SheffieldJane]

I was exactly the same at your level. Swooning with fatigue and an awful almost bursting pressure in my eyes - as an avid reader this was a real blow. I went to my optician and paid privately to have all the Opthamology tests with the state of the art equipment they have there and qualified. Eye pressure tests, peripheral vision tests, glaucoma tests, cataract tests, eyesight tests you name it. All they found was dry eyes and they prescribed some pretty effective eye drops that my doctor agreed to put on my prescription. Thealoz Duo eyedrops. I also found that a velvet wheat filled eye mask, heated in the microwave, followed by a gentle massage, cleared blocked tear ducts. I got new prescription glasses and contacts and sunglasses. £££££££I know!

This symptom has practically gone.

For the the fatigue, apart from having an afternoon nap whether I wanted one or not, I asked for and got a short Synacthen Test . This blood test measures the ability of your Adrenal glands to produce their own Cortisol, the function having been switched off and replaced by steroid treatment. I was in the under- performing category. There is a massive thread about what happened next under the title “ I received a syringe in the post......’.

So I know why I am tired and I am alert for any sign of an Adrenal crisis ( life threatening). Apart from that it is business as usual. Dsns reduction to about 5 mgs then stick there for a bit, contrary to the Endo’s rapid reduction plan. Which is good for Adrenal glands and bad for PMR.

I hope this is helpful and not too garbled.

[kathleen18 in reply to SheffieldJane]

Thank you for your reply. Interesting to know about your eye problems so perhaps I am not the only one after all! I kept going back to my optician and like you found dry eyes but nothing else, and I too use eye drops which help a bit, but they become heavy and tired (how I hate that word now!). Like you I also have an afternoon rest and restrict myself to only one activity a day if possible. Will this ever end?

So now the decision is whether to stay on 7mg or increase it? Heads or tails!!!

[SheffieldJane in reply to kathleen18]

Well I went down to 6 mgs, got a chest infection, had a flu jab before I was better then had my first flare. So I am now on 8 and still in pain. If half a mg is going to make you well for Christmas, I’d take it.

[PMRpro Ambassador]

Were you less tired at 7.5mg? If so it is probably a case of your adrenal function lagging behind. It should perk up if you are patient - but it all depends on whether you can cope with this level of functioning in the meantime.

[kathleen18 in reply to PMRpro]

I think I was fairly all right at 7.5mg provided I rested a lot. I have one or two full day events coming up before Christmas and I worry about coping, and should I cancel them or risk total exhaustion? I have taken 7.5mg today, my last one then it should be 7mg all the time. If I increase the dose, by how much? Thank you for your advice.

[PMRpro Ambassador in reply to kathleen18]

It really is something to ask your doctors about - and discuss whether you are capable of carrying on a reasonable lifestyle. Personally I'd take a bit extra for the day for the "events" to get me through it, like travelling. But none of us can or should suggest amounts...

[kathleen18 in reply to PMRpro]

Yes I realise that. My doctor is so popular that it takes about 3 weeks to get an appointment if you are lucky! So I put it off if possible!!

[PMRpro Ambassador in reply to kathleen18]

Experimentation is one way to go...

[Daisychain12]

Don’t give up all the things that make life fun. I beg you xxx

[kathleen18 in reply to Daisychain12]

Thank you, I try to keep some things going. I must!

[Daisychain12 in reply to kathleen18]

Yes darling it’s hellishly hard I know. But ultimately it will save you. Xxxx

[Sho-Sho]

I have struggled down to 7.5, have stayed at this dose for three months now as experiencing exactly the same symptoms, overwhelming fatigue and when tired my eyes get very blurry and heavy then next morning eyes fine again. I had a synacthen test which showed zero function so my Rheumatologist thinks this is probably aggravating the already existing symptoms from GCA. So been advised to stay at this level for another month and then try to reduce by half a milligram over five to six weeks, hoping to nudge the adrenals to do something.

Difficult time, hope things improve for you.

[kathleen18 in reply to Sho-Sho]

Thank you for your reply it is reassuring to know that others also have the heavy eyes problem. I began to think I was the only odd one! I shall try to stay at 7mgs and perhaps take an extra .5mgs or 1mg on an extra busy or eventful day. It will be trial and error.

[Joydeck]

In July I tapered to 6.5 pain-free for a fortnight, back to 7 and, a month ago, retreated to 7.5. I seem to need more and more pred to keep PMR symptoms at bay.

Even now I have shoulder and, to a lesser extent, leg weariness that was absent before July. Still, this week has been the best for a while.

The last six months around 7 mg seems a long time.

[Rugger in reply to Joydeck]

You are doing so well, having been diagnosed only a year or so ago. One of the studies quotes a mean duration for PMR of 5.9 years, so the message is "Patience".

I was told 2 years by my doctor, so tried to reduce too quickly and have had 2 flares in less than 3 years. Now I'm prepared for it to take as long as it takes and am tapering at 0.5mg per month, but will stick at any given dose if I have to.

Me: PMR since May 2016. Tapering DSNS to 4.5mg.

[kathleen18 in reply to Rugger]

You are doing amazingly well! I will have been on pred for two years in March and the symptoms started two years ago. Thought it would all be over in six weeks after a few pills!! Took me a while to accept the truth.

[Joydeck in reply to Rugger]

Thanks for the graphs. I started from 24 mg pred, 13 months ago. I will try DSNS soon.

[kathleen18 in reply to Joydeck]

It is so disappointing not to make the progress as planned. I was so optimistic and convinced I would make it. I do hope you continue to make progress too!

[PMRpro Ambassador in reply to kathleen18]

I'm afraid one thing you have to forget with PMR is planning a reduction schedule - no-one knows in advance what dose they will need even with stable PMR and it can flare at any time even without a reduction step that takes you too far. Take each week as it comes and it avoids the disappointment.

[kathleen18 in reply to PMRpro]

Yes, so true but difficult to follow or accept! Thank you.

[powerwalk]

Yes I know all about the deathly fatigue and the eyelid issues. They literally just want to close!! Its what gets to me the most now - the fatigue. You are NOT alone!!!

[kathleen18 in reply to powerwalk]

I absolutely agree - it's the awful permanent tiredness and the heavy eyes! Perhaps we should have an exclusive club which no one wants to belong to! I find it impossible to explain to other people.

[powerwalk in reply to kathleen18]

oh you're so right!!! Its just mad. I think I need surgery on my eyelids at this stage at keep them open!! I took the day off work on Friday - so that I can go to our Christmas Dinner!!!!

[kathleen18 in reply to powerwalk]

I have thought about surgery ( not seriously ) and sometimes hold my eyelids up to watch TV!

[kathleen18 in reply to powerwalk]

P.S. Hope you enjoyed your dinner.

[powerwalk in reply to kathleen18]

oh its this Friday coming!!!! Hoping to appear to be half human!! Thank you.

[Hidden]

This is similar to my experiences and I think it is the body adjusting to the change in medication dosage. It took me about 3 weeks to adjust to the new dose and feel improved.

[kathleen18 in reply to Hidden]

Did you have the eye problems too? I seem to have it most of the time but some days are worse than others

[Hidden]

I now have prednisone induced cataracts which will be dealt with eventually. In the meantime I find that sometimes my vision is clear and other times I need to move my glasses in another angle to get clear vision. Another thing I noticed is that when I was walking say down a winding path my vision took time to adjust to that and then adjust again as I looked back up to the level areas around me. Another post indicated that this was something she was dealing with so I took it as being 'normal' under the circumstances. Best to get your vision checked in any event to reassure yourself.

[PMRpro Ambassador]

This may be a total red herring but all of you with the drooping eyelids problem when tired should maybe speak to your doctor about it and ask to have myasthenia gravis ruled out. The drooping eyes tend to be a very early sign and it responds to pred - so if it were and you are reducing the pred dose it could fit.