Posted , 10 users are following.
i was diagnosed with both GCA and PMR two years ago! Ive been on the steroud and methotrexate voyage and am now down to 5mg of sterouds daily and 200mg methotrexate weekly.
My question is! Could i be suffering from ME?
The pains i am getting are all down my legs and im so tired all the time.
Ive had flu type symptoms for months and numbness in my face and hands. My memory is dreadful and i have to write things down!
0 likes, 9 replies
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Kdemers anne28129
Posted
I was glad to get off the Methotrexate and am not sure I would do it again. You are low enough with your tapering maybe you could try stopping the Meth.
ptolemy anne28129
Posted
Flu type symptoms are a part of PMR. Also at around 7mg or so your adrenal glands are starting to work again as the pred is not supplying enough cortisol for them, and that can course fatigue. In my case it was dreadful. I felt terrible, I had to make an effort to do anything. Even moving my arm to pick up the TV remote control was an effort!
anne28129
Posted
I know exactly how you feel!
I thought PMR only affected the upper arms and legs and the pain eases as the day goes by.
My pain is all over my legs and arms and doesnt improve as the day goes by
This is what makes me think theres something else lurking!
mary19068 anne28129
Posted
Hi anne28129
Have you been tested for low B12 and iron levels. Low levels of B12 causes tiredness and lethargy as well as numbness. As we get older we are unable to absorb B12 due to the declining of the protein Intrinsic Factor which helps B12 absorb through our gut, ileum and into our system. Also, certain medications black B12 absorption. Ask your doc to order a vitamin and mineral check as well as a complete blood count..For people over 55 years of age B12 should be between 500-900, so don't be fobbed off if they say 200-300 is normal if your over 55 years of age...
anne28129
Posted
Thanks Mary
Im at the docs tomorrow
krillemy anne28129
Posted
Before I started to take pred. 3 months ago, the fatigue, flu like symptoms and bad concentration was overwhelming. It was worse for me than the pain. I was in a terrible state of despair, and stated looking at the clock at 5 PM (time for bed soon I hoped). In the morning I felt like I had been out drinking, run a marathon and had no sleep. It alway lifted after a 1-2, but came back in the afternoon. After 5 days on pred. I felt like I reborn! I couldn't even remember that I had ever felt so good 😃 So I understand that it is part rheumatism/PMR and I do not think pred. works for ME. Try taking more pred. for a few days. If it helps your tiredness - you have your answer. You are taking vitamin D ?
anne28129 krillemy
Posted
hi krilemy
ive been on steroids for over two years!
I was put on meth to help reduce the level of steroids which i did gradually. I have had several flare ups when i have needed to up the steroids.
I just wish it would go as quickly as it came so I can get on with living, and dnjoying my retirement!!
Anhaga anne28129
Posted
Possibly if you have a reasonable doctor you could try a larger dose of pred to see if the problem simply is that your dose is now too low. At what dosage did you last feel pretty well? When did you start the mtx and why?
EileenH anne28129
Posted
Far more likely that it is your adrenal function trailing behind the reduction in pred dose. Only being at slightly too low a dose will stimulate them to wake up - but being at too low a dose will lead to the typical symptoms of adrenal insufficiency. Methotrexate has no effect on that. Since you have been on mtx a long time it may not be that but I felt like you describe after a mere month on mtx!!