Vision w/Prednisone

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.  

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.  

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.

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. 

Waiting until you are home again is a good idea, as MTX can have some side effects. I haven't had any, other than rasied liver function markers which are currently being monitored.  

MTX takes about 6 weeks to really start working so it won't happen quickly. The additional prescription will be for Folic Acid. It counteracts the side effects of the MTX, so make sure you take it... I currently take 20mg MTX followed by 15mg folic acid for three days. If you start feeling poorly following your MTX dose your Dr might suggest you take the folic acid for a few more days - one day might not be enough, depending on the dose.

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.

and to extend on this thread.... some people take it daily -  other than the day they have the MTX.

Interestingly there was a short peice on the news last night about MTX - apparenly some people (they intimated that they were 'old' people) are dying because they are getting the folic acid and MTX tablets mixed up.... I don't know about elsewhere, but here they look almost identical. So they think some people are taking the MXT daily and the folic acid once a week!  

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.  

Mine come in very similar bottles and look 'almost' the same. The MTX is smaller and oblong while the folic acid is round, but they are both yellow, so I can see why they could be confused if you weren't paying attention (if a carer was in a hurrry perhaps, or your eyesight wasn't so good?)