Kerfufalmelodious

[Kerfufalmelodious]

I was diagnosed as having PMR 12 months ago and was started on 15mg Prednisone which was changed to 20mg after a consultation with my Rheumatologist. I then gradually reduced my dose slowly down to 7.5. mg a day. My rheumatologist Is now tapering my with 7.5 and 6 mg every other day for 2 months the 6mg for 2months before I see him in July. Since I’ve been on this regime I m getting stiffness in my limbs, very sore joints and cramp in my calf’s. I also have very dry eyes which the Hylo-forte drops seem to do nothing to alleviate this and after a few hours my eyes are so bad I cannot see to read, do any of my hobbies and I wanted it know Is this a PMR problem. I am concerned my eye sight will be permanently damaged. I have had to give up driving as a result of this. I had a cortisone injection in my knee 3 weeks ago but my knees are very painful and I’m finding it hard to walk more than a few feet before the pain gets really bad. I also have a very dry mouth all the time lose my seance of taste often. I find, if I do a lot of things one day, I am exhausted the next day or two. I’m sorry this Is so long but can anyone tell me if all or any of this is down to PMR or steroids. Thank you

[PMRpro Ambassador]

I'm afraid it is likely to be one or other or both! If hyloforte isn't helping try a different variety of eyedrops, they are usually very good but different people get on better with different brands. And you do often need to use them a lot.

I really don't understand why rheumies seem so keen on these alternating doses ideas to taper the dose - we feel it just confuses the body, especially at this sort of dose where your adrenal function needs to start waking up. That, combined with the fact it sounds as if you are starting flare with symptoms suggests to me you have got down to slightly too low a dose to manage the inflammation. You aren't heading relentlessly to zero, you are looking for the lowest effective dose and I suspect the 6mg is making this too low.

[PMRpro Ambassador in reply to PMRpro]

And PS - could you please change the title to something indicating the content of your post rather than your name. The people are more likely to look and it should also bring up Related Posts.

[Kerfufalmelodious in reply to PMRpro]

Ok I will next time. This Is the first time I have ever posted so will take that on board. Also thank you for you advice I will sloop at other eye drops

[PMRpro Ambassador in reply to Kerfufalmelodious]

You actually posted about your eye problems 7 months ago. Are they not any better?

[Kerfufalmelodious in reply to PMRpro]

No they are decidedly worse, I get lots of sharp pains at time, my eyesight has definitely deteriorated and they are permanently bloodshot. I use a warm eye mask at times which helps a bit while wear it but does nothing to relieve the overall condition. Thank you for your reply

[DorsetLady PMRGCAuk volunteer]

Many of us on this forum are not fans of the alternate days of tapering - and 7.5mg toggled with 6mg is an odd approach. Once below 10mg it’s much better to try and reduce by only 0.5mg a time. If you tried that from now, reducing monthly you’d still be at 6mg by July - and probably a lot easier on the body.

The exhaustion may well be your adrenals struggling - and a taper with smaller steps would help them as well.

[Kerfufalmelodious]

Than you Dorsetlady. I think I will do as you say and slow the process a bit.

[SheffieldJane]

I too have dry eyes and find Thealoz Duo the most effective eye drops so far. I also go to my well equipped optician and pay to have a thorough eye health check up - back of the eyes, peripheral vision, 3 D slides that are kept to spot changes. It costs me £60.00 but it puts my mind at rest. I also have a dry mouth, especially in bed at night. I use Xylimgxyling tablets to suck from Finland. I found them on Amazon, they seem more effective than the pastilles I am prescribed, my eye drops are on prescription but they can be bought. Neither item is particularly cheap but they work.

[HeronNS]

Your combination of symptoms (dry eyes and mouth and painful joints) kind of reminded me of something and I plugged them into Google and came up with Sjogren's syndrome. Has this ever been raised as a possibility? Treatment might be different than for PMR.

[Bramble2000]

Sjogren’s Syndrome springs to mind but could be separate things going on.

[Pixix]

I have dry eyes (but suffer with macular degeneration)…I find the ‘normal’ saline eye drops are better that the Hylo-forte. But youhave to have the bottle in your pocket all the time & keep using them…not just a drop at bedtime etc. I guess you’ve been to the optician, & checked there’s no problems with your eyes. I also have blepharitis…& the treatment is a mask that you warm in the microwave & wear for ten minutes a day. Worth checking if you have that! I’m finding it hard to continue wearing contact lenses now. And, yes, Ihave a very dry mouth…I wake up, on average 2-3 times a night with my tongues stuck to the roof if my mouth, & during daytime I carry fluid everywhere…in the car etc. my Dr has prescribed a ‘saliva Spray’ as my mouth is so bad…to use at night. New to me I picked it up Thursday, but it helps. You can buy sweets (but not sweets!) that help with saliva production, too. I’m not at home & can’t remember their name, but Google will help! I do not have Sjögren’s syndrome (though I have a lot of joint problems, too, & the tiredness). For me, the main cause appears to be propanalol, a drug I take to control my tremors…I take 16 tablets a day. Plus the buprenorphine pain patches. I’m finding lots of my drugs can cause it, not just steroids, so look up side effects if other drugs you take, maybe? As you’ve had this problem for over 7 months, I’d be pushing my opticians to take another good look, &, if nothing optical causing any of it, back to the Dr. I have discussed it with a Rheumatologist in early days, & she just shook a bottle of saline in her desk & said you really have to use these drops often to rehydrate your eyes, keep using them!! I’m wondering how often you use eye drops.

[Numptybrain]

Hi and snap, I use daily and nightly drops but I’m struggling too. I’ve had new reading and distance lenses and the ophthalmist suggested I had RA but when I mentioned this to rheumatologist he just shook his head with dismissal quite rudely. I’m bone on bone, my days of joint swelling are gone so how on earth can the rheumatologist rule out so easily any RA involvement even SLE which respiratory team are strongly advising him to look for but because my bloods say no then that’s it. I definitely have sjogrens, he can’t deny that although he’s not treating me for it. Grrr

Wendy xx

[Kerfufalmelodious in reply to Numptybrain]

Thank you all for all your advice and help. I will mention

[Kerfufalmelodious]

Thank you all for advice and suggestions. I will ask my rheumatologist about Sjogren’s Syndrome when I see him next. I will also ask my GP when I contact him about my Bradley swollen legs. I will go to see my optician as well to see if he can help. I’ve already had the extra things spoken about and he did send me to the hospital and they said everything was fine but they were looking for a cataracts which although I have early signs they do not need any treatment at this stage. On e again thanks sharing with me.

Kerfufalmelodious of Rochester Kent.