This subject became part of a discussion I had on shingles but I thought, since this is a different topic, I would start a new discussion.
A brief history: I have been on pred for over 2 years, I was down to 4mg and started the DSAS method (which has always worked for me) to 3.5. I got to the third week and realized I wasn't having pred withdrawl and that a had flare started. I went back to 4mg (4days) and when that didn't work went to 5mg. When that didn't work, and on the advice of Mrs. O and Eileen I went up to 10 mg to try and give it a kick.
Mrs. O said that she had to go to 10mg at one point because of a flare and after 2 weeks then went to 7.5 and 5. My question and concern now is that I have been at 10mg for 3 weeks and have only felt like I did at 4mg for that last 5 days. I really want to reduce from 10mg but am afraid it may be too soon. Help!!
I'm going to Mexico in 2 weeks and I was thinking that I would just stay at 10mg till I'm settled there but then I've been on that dose for so long will it affect my reduction? Travelling hasn't bothered me in the past even at the 4mg.
I had a CRP this week and it was only 1.8 so not showing any inflammation. My rhuemy, who I saw yesterday, suggested I might want to try Pacquil as a helper to reduce my pred. I really don't want to take any more drugs. Already on meds for BP, cholesterol and glaucoma.
Looking forward to your thoughts
Hugs, Diana
You can only try - 1mg at a time and DSANS! You can stop at any time but it will get you lower.
Diana, the positive news is that you say you have actually felt as good as you did at 4mg for the last 5 days back at 10mg. Each of us will vary in the time needed to control a flare in inflammation. As far as PMR and steroids are concerned there is no 'one size suits all'.
If you still feel comfortable after another few days then you could try popping in the odd couple of days at 7.5 and test the water. But seriously, I feel concerned for you if you rush any reduction now, especially in view of your forthcoming long trip. If you manage to successfully reach 7.5, then, if it was me, I would be content with that until after the holiday.
I don't know how high a dose of statins you are taking for your cholesterol but I was talking to someone a few days ago who was taking 40mgs and pleaded with her GP to reduce it. Since reducing the dose to 20mgs, she has found a big improvement in her PMR pain!
Oh me too.. I cut out statins altogether and it made a hell of a difference. In fact I am sure that the statins triggered the darn PMR in the first place. never had anything like this before taking them. I always up my Preds if I am travelling...even for a few days because the stress of travelling just sets up a bad reaction and spasms etc.... especially on cheap flights where you have to climb stairs and everyone is pushing. 'messing about with meds' as my Doc calls it has made me able to reduce quite quickly if I take abooster for a few days. I am sure by this summer I will be down to a low maintenance dose.
Yes, I'm very thankful that I feel human again.
As you suggested, I think I will try 7.5mg next week maybe every 3 days and see how that goes.
I am very lucky that when I'm on holidays the stresses of home stay at home and I always feel much better. We are away for 8 weeks so hopefully my body will get happy and even if it doesn't it's nicer to be in the sunshine.
I am only on 10mg of statins so I don't think they have much of an impact with the pred but it's certainly something that's good to know.
Thank you for your advice again....
Hugs, Diana
Christine, I have high cholesterol but even though I'm off steroids I really don't want to take statins and take the risk of stirring things up again. I've just started taking a Betaglucan food that I saw in Lloyds which is advertised as reducing cholesterol - we will see. It is the same ingredient as in porridge oats but in larger supply.
Diana, fingers crossed for you - enjoy that lovely sounding holiday and it should be a warm welcome back for you by the time you return.
I took a statin for 10 days, not even every day, just alternate days. Had I carried on any longer I'd have been in a wheelchair. That was after years of PMR, it didn't cause it but it made it far far worse. Never again.
But having lost weight and being at a much lower dose of pred - cholesterol is fine now!
too many statins are prescribed today... before anyone is even tested for compatability. They certainly ruined my life within a week of taking them. Never recovered fully and now always prone to muscle problems as well as PMR. Even when PMR remits as I am certain it will ..I will always have the statin damage. My cholesterol is not even that high for my age and my diet is perfect. I do not need these things but doc keeps prescribing them even though he knows I will not take them... I am sure its a get out for docs in anyone who has had a heart problemin the past. (I had a stent inserted after Graves disease caused me some problems) That was years ago and am perfectly healthy other than PMR. Even insurance companies are not interested in heart indidences that have not been a problem for 5 years or more.
Dear Mrs Mac
have PMR on press, currently on 22 mgs trying to come down very slaowly as advised.
looking at your post you say that you are on meds for Glaucoma
i have just been diagnosed with this and feeling really scared
the eye specialist has put me onto eye drops Xalatan, one drop in each eye every day.
the chemist told me to read side affects carefully but reall y gave no option but to follow the specialists instructions
how long have you had Glaucomma
any advise would be grafefully received.
Ann, I hope Mrs Mac doesn't mind me replying, but as I also use Xalatan for high eye pressure, I just wanted to reassure you that there is nothing to fear from using these eye drops. On the contrary, they will help protect your eyesight by reducing the pressures in your eyes. The advice is that after inserting the drop into the eye, you should put some gentle pressure in the corner of the lower eyelid pushing your finger gently up towards the nose - there should be a diagram on the leaflet enclosed with the drops.
It took about a year for me to get back to where I had been. The really annoying thing was that I was told I HAD to take them after being diagnosed with atrial fibrilllation - by the general physicians. When I stopped them immediately the cardiologist was fine about it. A/f doesn't count as a "cardiac event" apparently and there is no eveidence they are protective in women who have not had a "previous cardiac event". Never again!
Yes my problem too...it turned out that the atrial fibrulation was a nasty side effect of Omneprazole proton pump inhibitor. Since stopping that I have never had any AF... it stopped within 48 hours of ceasing that medication. I have had a hard time adjusting to life without PPI but I am managing and getting better every day.
Thank you for your reply
its reassuring to hear someone else in the same boat
the worry came from the leaflet about the side effects.
thank you for the advice re putting pressure on the nose after putting in the drops
wasn't to sure of where to press
how long have you been taking the drops?
Ann G
Have you tried old-fashioned ranitidine (Zantac)? PPIs have some nasty side effects as well as only working for about 1 in 3! Wonder-drugs eh???? If they say so!
My a/f is almost certainly due to damage caused by the autoimmune part of PMR. It's fine on medication but it was very interesting when it happened in response to iv valium for a back muscle problem!!!! Nearly got sent to ICU but there wasn't a bed and then spent 3 weeks in hospital instead of 2 days. At least our food is better here than in the UK!!
Ann, I've been using Xalatan for several years and other drops for a few years before that
Hi Ann,
it is always scary to find out we have something that threatens our sight. I do have a family history of glaucoma and macular degeneration. My eye pressures were high for about 6 years but my opthamologist felt not high enough to start drops. That was until I started taking the prednisone 2 years ago (20mg). My pressures increased substantially and there was no option but to start the drops. I use Combigan, one drop twice daily. They helped right away and the last time I saw him my pred. dose was at 5mg and he said I may be able to stop the drops when/if I get off the pred.
i agree with Mrs. O about the side effects since I have had no problems. I'm not familiar with Xalatan but I think it's wise to find out about possible drug interactions if you are on several different meds. Since I am already on BP meds my Dr. suggested I watch my BP since Combigan contains a beta blocker but I'm fine.
There are many new treatments for glaucoma so loss of sight is minimumized.
I hope this info reassured you a little🌻.
I am 65 in case you're wondering.
Hi Mrs. O
I think I remember that you also had GCA. Do you think this may have had something to do with your glaucoma?
i Hi Mrs Mac
Yes, you have a good memory - or perhaps I've just repeated myself on here a bit much! I did have GCA, together with PMR, but my high eye pressures had been diagnosed some years before, so no connection with GCA in my case. Although somehow my medical records now state 'Glaucoma' , I had previously been led to believe by some ophthalmology doctors that I didn't have glaucoma, but high eye pressures which could lead to glaucoma if left untreated. Untreated, it can lead to loss of peripheral vision initially. Apparently it is possible to have glaucoma in spite of having normal pressures, whilst some people with high pressures do not actually have glaucoma. Certainly I have a close friend who has recently been diagnosed with glaucoma in spite of having normal eye pressure. However, she does have glaucoma in her family background whereas I don't, as far as I am aware.
When GCA came on the scene I decided to see an ophthalmlogist privately (no luck with being referred on the NHS!) and have continued having 6-monthly appointments with him, when he checks the optic nerve to ensure it remains unaffected by the high pressures.
I guess the Combigan you use is similar to Lumigan, a beta blocker that I used for a short while but stopped when we discovered it wasn't recommended for anyone with a kidney problem. The Xalatan isn't doing a great job of controlling my pressures but the consultant is loathe to add in another drop because of my reduced kidney function, so the 6-monthly checks are vital and reassuring.
The only frustration is that I'm at an age when I have to renew my driving licence every three years and the DVLA always hold up the new licence pending my referral to an optician of their choice for extensive eye tests due to having been diagnosed with glaucoma (they won't accept any recent eye test results!) I'm in the middle of such a process at this moment which takes a couple of months - it's always a relief when the new driving licence arrives!
As MrsO says - you can have raised pressures that are not glaucoma. Glaucoma is a set of criteria including raised pressures as one. It is the same as GCA is an LVV (large vessel vasculitis) but not all LVV is GCA.