Newly Diagnosed with PR

Soversen

Hi,

My apologies in advance, but this is going to be a rather longwinded post.

I was diagnosed with Palindromic Rheumatism back in April 2014. I have many questions, but first I'll relay some of my experience.

I am a 43 year old male and I work as an electrician in a Power Plant.

I have a history of about 10 years with moderate Plaque Psoriasis, which has affected my knees, left elbow, navel, forehead, and small areas on both hands. The history of Psoriasis led me to believe that I have Psoriatic Arthritis.

I have also experienced nearly daily pain in my right foot when I get up in the morning, which in the past has gone away after I am up and moving around for about 20 minutes, but in the last month or so seems to last for several hours.

Starting last January I began having severe joint pain. It started in my left knee, lasting for about a week and then quickly subsided. A few days later it was my right shoulder, which lasted about 3 days and then that went away with a cortisone shot (I should say that the shoulder pain is a recurring event that I have had come along every couple of year since my late twenties when I tore my rotator cuff, so that may not even be related to the PR diagnosis). Next was right knee, which also subsided after a few days. During the past winter and spring I experienced several similar episodes in both ankles both knees, right wrist and in my right hand.

After several trips to my General Practitioner with no clear diagnosis, I went to see a Rheumatologist. When I went in for my visit I was first seen by a Resident who listened my explanation of the symptoms and then made the initial diagnosis of Palindromic Rheumatism, and then a Rheumatologist came in and had me explain my symptoms again, and she made the same diagnosis. Because of the two independent diagnosis’, I am pretty confident that they got it right. I was sent to get a liver ultrasound which showed that I have a mild case Fatty Liver Disease. At the time of the diagnosis I had gone several weeks without any flare-ups, so with the liver condition we decided not to start any Meds until the fall. I had a pretty good summer, with only one flare-up.

I went back to the Rheumatologist at the beginning of October, and she had me start taking Methotrexate. She also prescribed a Vitamin D supplement (I have a severe Vitamin D deficiency) as well as Methyl CPG (Methylated B2, 6, 12, and Folate).

In the last few weeks, I have had a few flare-ups in my knees and right hand. I have also had lower intensity but fairly consistent pain in my right hand and right foot.

I have some questions about diagnosis and medications.

1. I have seen references to Palindromic Rheumatism, and Palindromic Rheumatoid Arthritis; are these two different conditions or, just two names for the same condition?

2. Does the Methyl CPG make the Methotrexate work better, or is it used to alleviate the side effects of Methotrexate?

3. Does Methyl CPG have other names? I have tried to find info on this but I can’t seem to find many references to Methyl CPG online

4. Does the weather aggravate symptoms of PR?

5. What kind of results have people seen with Methotrexate?

6. What side effects do most people experience with Methotrexate?

7. Has anyone had certain foods trigger flare-ups?

Any help on these questions would be very appreciated.

stickywicket

Hi. It's good to meet you but, as we say round here, sorry you had to find us

I have RA. Not quite the same but I've had it for over 50 years and been a regular on this forum for several years so a bit of knowledge sticks I'm a bit surprised you have the diagnosis of PR when you've had psoriasis for so long but I don't think the diagnosis matters too much as long as you are on DMARDS (Disease Modifying Anti-Rheumatic Drugs) which you are with methotrexate. I would have thought you'd need to be on it all the time rather than just when flaring but, in that, PR might be different from RA and, besides, the liver condition is important hence our regular blood tests.

I'll try to answer your questions.

1. I think Palindromic Rheumatism and Palindromic Arthritis are one and the same. I don't think I've ever heard of Palindromic Rheumatoid Arthritis.

2. I'm not familiar with Methyl CPG. (I'm guessing you're not from the UK. Other countries might do things differently.) Folate, or folic acid is normally given to mitigate the side-effects of methotrexate. Dosages vary widely but I've always done well on one 5mg tab twice weekly.

3. See above.

4. I don't think there is a proven connection between weather and arthritis symptoms though most patients notice some differences. Some can't take heat and others cold. I suspect it's more to do with barometric pressure.

5. A tough question. These forums are weighted in favour of those who are struggling. People who are dealing well with their lives tend not to come here. No med suits everyone. I think meth has a very good reputation and is the natural go-to drug for most inflammatory forms of arthritis. I've done well on it for 14 years.

6. Forget side-effects Read the leaflet then assume they won't happen. Mild nausea and very mild hair loss are the most frequent. Just keep up with your regular blood tests and anything important will be highlighted early.

7. Yes and no. We all try to tie flares into things. Mostly they seem to happen because they happen. Insofar as we attribute them to foods, we tend to all attribute them to different foods. Try reading some of Arthritis Care's publications. http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement/Healthylifestyle
I also find Arthritis Research UK a useful site. Here's one of their pages on Palindromic Rheumatism. http://tinyurl.com/qblmj3k

Good luck