I have been on Prednisone for several weeks now for PMR. I have always had some vision problems as I have Retinitis Pigmentosa. Now, however, I am feeling that I am looking through a very fine piece of guaze. My central vision has remained very good over the years. The RP has mostly caused very poor night vision and peripheral vision is very bad. Since my central has remained good over all of these years, I have managed quite well. Now that I am feeling that I am walking in a fog, I am becoming very concerend. I had cataract surgery in both eyes five years ago. I have not been to my retina specialist since beginning the Prednisone. I will be weaned off of it over the coming months as I am being placed on Methotrexolate in a weekly dose. Has anyone had similar problems? I am hoping that the vision changes will be temporary and go away once I am off of the Prednisone.
I am having lack of vision since this past week. Never happened before.
I will see the eye doctor as soon as possible then I will post the result here.
Keep safe, keep well🌺
Thanks, good luck to you. I am pretty used to having vision problems, but this is really scaring me as I am concerned about it being permanent. Would love to hear from anyone who also has RP as well as PMR who needs to take Prednisone.
I honestly don't think I have heard from anyone who has RP and PMR on any of the forums. Is there one on this site for RP? You might have more luck there.
I really would try to see your eye specialist though as this would be something really specialised. There is always the risk that your PMR is the beginning of GCA and that only responds to high doses of pred although there has been a clinical trial of tocilizumab in GCA and it looks very promising for reducing the pred dose required - even replacing it. It is used in rheumatoid arthritis but isn't yet approved for GCA. Unfortunately it is very expensive compared to pred but might be offered to you if you were to develop GCA and your eye specialist was concerned about the effect of pred.
Don't get your hopes up too far about methotrexate, sometimes it works to lower pred dose and sometimes it doesn't. It also doesn't replace the pred I'm afraid - if it did they would use it more often.
Thank you so much, Eileen. I have thought that I should go on a RP site also. The symptoms that I have read for GCA do not seem thus far to apply to me. I have had no headaches, scalp feels fine. My primary complaint has been the shoulders and thighs aching. I had a fall a few months ago that may have precipitated all of this. My rheumatologist agreed that this could be the case. I do find that as the day wears on that the haziness in my vision clears a bit. I was diagnosed with the RP 47 years ago, so I am one very blessed individual to still have my central vision. I appreciate your response. I know that the Mexotretholate may not be the answer, was just hoping that perhaps I could get off the Prednisone ASAP due to my already compromised vision.
You are a very lucky lady indeed - my cousin was dx'd with RP in her late teens and has been registered blind for a long time now. She's well younger than me so can't be more than mid-50s. No history in the family - well, as far we know, after all who knows how many side-springs there were in the past! But she apparently does very little - has never taken any advantage of the blind training opportunities she was offered. Maybe she was too old when the final sight loss occurred - we have a friend whose daughter has a pair of very rare and strange syndromes and she lost her sight entirely at about 20. However, she had been to the Blind College at Worcester in England beforehand and now runs her own business! She wasn't expected to live that long - the other syndrome led to kidney failure. Her mother was a perfect match and the living donor kidney has been fantastic after a rather rocky start. The miracles of modern medicine!
Have you considered that if the fall was the primary cause that it might respond at least partially to other management? I have myofascial pain syndrome as well which causes muscle spasm in my back. Bowen therapy helped a lot to reduce the overall problem, plus I had local steroid shots into the trigger points and manual mobilisation of them too by the local pain clinic. The ongoing cause was actually a wisdom tooth growing in very crooked - removing it has almost cured it! The PMR is still there in the background but is far easier to manage now and on a much lower dose of pred.
Thank you for your very thorough and thoughtful reply. I had one uncle who was blind for several years befofe he passed away. His was RP. I do not know of others in the family. I have children and grandchildren, so far no one else has been diagnosed with it. I have had a cortisone shot in my left shoulder as the fall did make a tear that may have to be surgically repaired. Since th shot, my shoulder has been pain free. I am hoping that if indeed fall brought this on that it will heal more rapidly. The fall was directly related to my lack of peripheral vison. am in my 70s, however, in very very good health and very active. I tend to move around more quickly than I should. I tripped over a magazine basket next to a chair in my family roo. I have excellent vision outdoors. Artificial lighting makes vision inside very poor. Many establishments work on ambience, that is good for the romantic, not too good for me. Thank you for your messages. I hope that you will soon be pain free. I had never even heard of PMR until all of this happened to me. I am amazed at how very previlent it is. Have a good day, and thanks again.
Ein Wort zu MTX – aus eigener Erfahrung. Ich wurde auf MTX gesetzt, da ich die Pred-Dosis von 20 mg nicht senken konnte, ohne mich sehr krank zu fühlen. In den letzten sechs Monaten konnte ich auf 5 mg herunterfahren, aber ich bin an der Grenze angelangt. Mein Rheumatologe sagte, ich mache „sehr gut“, da die meisten Menschen an der etwa 7 mg-Marke an die Grenze stoßen – wenn die Nebennieren wieder anfangen zu arbeiten.
Was Sie wissen sollten: MTX hilft bei den Symptomen der PMR nicht, es macht nur die Wirkung von Pred effektiver.
Also, selbst mit MTX habe ich kaum Hoffnung, bald von Pred loszuwerden.
Thank you so much. This is all so very new to me. I have been trying to remain optimistic. I have not started the Methotrexate yet as I am going to be on vacation for a week and didn't want to begin a new drug while being gone. I will begin taking it in about ten days. Six tabs once a week with a med the next day to coutner the side effects. I am picking the prescriptions up tomorrow, so don't even know the name of that med yet. This is my first time to join a group for something like this, but am sure glad that I have as I realize that I am not alone. I appreciate you feedback. Good luck to you also.
Es ist eine gute Idee, bis Sie wieder zu Hause sind, zu warten, da MTX einige Nebenwirkungen haben kann. Ich hatte keine, außer erhöhten Leberfunktionswerten, die derzeit überwacht werden.
MTX braucht etwa sechs Wochen, um wirklich zu wirken, daher wird es nicht schnell passieren. Die zusätzliche Verschreibung wird für Folsäure sein. Sie wirkt den Nebenwirkungen von MTX entgegen, also stellen Sie sicher, dass Sie sie einnehmen ... Ich nehme derzeit 20 mg MTX gefolgt von 15 mg Folsäure für drei Tage. Wenn Sie sich nach Ihrer MTX-Dosis schlecht fühlen, könnte Ihr Arzt vorschlagen, die Folsäure für einige weitere Tage einzunehmen – ein Tag reicht möglicherweise nicht aus, abhängig von der Dosis.
Just wanted to reinforce Flip's comment on folic acid - one day a week may well not be enough. If you develop any mouth ulcers that is a sign it isn't - and to get your doctor to provide more. Most people take it for 3 days (never the same day as the mtx), but I know some who take it for 5 days. Like everything else in PMR - everyone is different.
HI Donna, I had what I can only describe as a few episodes of 'pixilated vision at the very start of taking prednisolone 15 mg dose. My dr suggested this could be occular migraine and reduced my prednisolone dose by 2.5 mg and that was the last time it happened. Apart from needing glasses to read I don't have any other eye problems normally so still worth getting yours checked out.Its a very scary experience and I took a couple of tumbles so take care and I hope you get it sorted soon 🤗
Taking a fall is somehting that I am very afraid of, as I do believe that all of this started that way. I am glad that you have a handle on your vision. I will be checking with my ophthalmalogist. I have not taken my prednison yet this morning as I need to wait to eat first. My vision is bettter before I take it. That to me is perhaps good news saying that if I can get off of this stuff that the vision will clear up again. Of course, my vision is never perfect but was better before this med. I am also no experiencing pain in my wrist which I did not have before. I am sure hoping that I don't have something new going on. Thanks for writing.
I understand it was due to the stimulation effect that prednisolone has on the liver to dump glucose stores into the blood stream a bit like a hyperglycaemic attack ( gosh I must have had a lot of sugar in there haha!)
und um auf diesen Thread einzugehen.... einige Leute nehmen es täglich – außer am Tag, an dem sie MTX nehmen.
Interessanterweise gab es gestern Abend einen kurzen Beitrag im Nachrichtenprogramm über MTX – anscheinend verwechseln einige Leute (sie deuteten an, dass es sich um „alte“ Menschen handelt) die Folsäure- und MTX-Tabletten miteinander. Ich weiß nicht, wie es anderswo ist, aber hier sehen sie sich fast identisch. So denken einige, dass die Leute das MTX täglich und die Folsäure einmal pro Woche einnehmen!
I am planning to keep those two meds in their original containers since they are only taken once a week. That is pretty scary. I often see where it is the elderly who get mixed up, but it can be at any age. I am actually of an age to be considered elderly, but do believe that I still have all of my 'marbles' so to speak. Thanks for the warning. I also wonder how they could do this when you consider the dosage. I just picked mine up. The MTX has 24 tabs in it, six each week for four weeks. The other one only has four pills in it for one the day following the larger dose.
Die Pillen kommen in sehr ähnlichen Flaschen und sehen fast gleich aus. Die MTX ist kleiner und länglich, während die Folsäure rund ist, aber beide sind gelb, daher kann man verstehen, warum sie leicht verwechselt werden könnten, wenn man nicht aufpasst (vielleicht wenn ein Pfleger in Eile ist oder wenn das Sehvermögen nicht so gut ist?).
Hello, as I was reading the posts to learn everything I can about this dreaded PMR that I have had for 18 months, I ran across your comment regarding your wisdom tooth that was growing in crooked and how you had it removed. Did I understand that removing the tooth seemed to cause an improvemnent in your PMR symptoms and management?
The reason I ask is that it has occured to me that my PMR pain started about two weeks after I had a root canal on a back molar. I have been thinking about this for several months and am considering having the tooth pulled. It would be a gamble, because I could lose a tooth and perhaps I won't see any PMR improvement - but perhaps I would. It seems it helped your PMR situation and that is rather exciting. My husband says that since I am 70 years old, I should give it a try (meaning so what if I lose a tooth at this age) I would appreciate any comments that are offered. I can't help but think that the root canal is directly involved with the onset of PMR. Thank you so much.
Not the PMR itself, no, but what I call the add-ons which are very common alongside PMR. If you have any back muscle problems, PMR seems to make them worse, especially if you have myofascial pain syndrome. Anything that then puts any stress on your back muscles will make it worse.
The crooked tooth wasn't causing the PMR but it was affecting my bite and neck muscles, which was making my back muscles work even harder at their job to keep me upright and mobile. That alone can be uncomfortable and for a long time they adjust, flexing like the guy ropes on a tent in wind, but eventually they give up the unequal struggle and go into spasm. Which hurts.
The degree of pain depends on how severe it is and what other structural bits are affected. In my case it was particularly bad in the lower back which tightened the sacroiliac joint and made it rub and become inflamed. It was just a downward spiral. I fell, that gave a shock to my back muscles as I tried to save myself - and bingo, a REALLY bad back which eventually got so bad I couldn't move. Sorting all that out and taking out the basic cause, the tooth has helped a lot overall. There are still twinges, but they go if I rest and am careful for a few days.