Hello! I have a few random questions...1st, does the cold weather affect RA? I don't think so as much as osteoarthritis, but I'm trying to educate myself as well as family. None of the research I have done indicates that weather is a factor, but thought I would send it to the board of experts
I am not on the medications you mentioned, but I can offer what I know about the cold...just posted about it yesterday. I had an appointment with my Occupational Therapist to pick up my "buddy rings" and when she asked how my hands were doing, I told her I was having symptoms similar to frostbite now that the weather has gotten cooler. She said to mention it to my doctor (I have an appointment next week) and told me about Raynaud's Phenomenon, which causes these symptoms and often accompanies connective tissue diseases. If you Google it, there is information that might be helpful. I am so glad I "fell into" this board - there are so many caring people happy to share their experiences. Thank you so much for your posts. I love this board and am so lucky that i found it early on. I feel like everyone here is my friend even though I've never met any of you. This is a very scary diagnosis and it helps to have people around who know what you are going thru and are so kind and loving. RASara82, you are right, I am on a low dose of Pred. I didn't want to be on it at all. However, I was in such pain and discomfort that I agreed to take it for awhile. Thanks again for the info and keep it coming.....I hate when I m on pred. so I understand not wanting to be on it.
Barb, Thank you for the information. I feel really lucky that I was diagnosed quickly. I have read some real sad stories of many who are having trouble getting a diagnosis, or an accurate diagnosis. I think my Dr. will be open to anything I want to try as far as meds. He was the one to suggest the MRI, which I got the next day after my diagnosis. That was just last week, so I'm well on my way. Katie, I have heard about the barometric pressure effect but haven't kept a good enough journal to know if I'm affected by the weather change or not. Here in missouri, it is cold and rainy today. I'm feeling pain, but i'm only on 10mg of Pred so far. I love hearing everyone opinions and thoughts, keep them coming! Phatgirl Phatgirl - When I was younger my dad had a fancy barometric pressure reader. I remember telling him that I felt bad in the morning - he'd go read the pressure, and sure enough, it'd be off from the norm. As I got older, I started checking it myself. I've always seen a pattern. Even when I was in remission, I could still tell when it was changing by my sinuses. If I started feeling crummy, it was usually a sign of rain or storm! It still affects me. As we speak, its overcast and I have a slight pinching at the top of my nose. Don't think it'll rain, it's just a dreary day. LoL Definitely affects me. I can feel the storm coming in even if it is coming all the way from California. The pressure builds up terribly. But once it rains, what a relief! The other night was horrible, we had one system coming in right on another. There was nothing sufficient enough for the pain. I couldn't walk. My hips swelled, knees, everything. Often I ask my daughter if it is cloudy outside and she will come back with a "yes." Marzapan, That is the direction I was planning on taking. Hopefully my dr. will be agreeable. he basically said I needed to read up and decide what meds i wanted to take and let him know at my next appt. Will Enbrel help with fatigue? I am so darn tired, I hate it. It seems like some days it is a struggle to get out of bed. I am aware that depression often goes hand in hand with this diagnosis. I don't feel depressed, just really tired. It's like I want to do something, but my body says whoooahhhh nelly, wait a minute... Anyhoo, thanks for all the wonderful posts. You guys are the best.
As far as the drugs, I was on Enbrel and than switched to Humira. The enbrel hurts less to inject but I was having organ involvement, my eyes mainly and they said the humira works best when other organs get involved. My rheumy explained to me that Ebrel mops up this tnf protein after its produced and the humira actually helps to shut down the production of it. I've been on the humira about 8 weeks now, once a week injections and at first it did help a lot with the tiredness but once this flare started up, nothing seems to be helping. I've not gone the mtx route yet as I may want to try and get pregnant in the next year but I may have to forgo my hopes of a family to get this disease under control. i am on placquenil and prednisone along with the humira right now. The weather does seem to effect me. The humid weather seems to be the worst for me. I have been on a few different meds over the years and I personally think I've had the best progress out of Plaquenil. Been on it for about 13 years or so and just recently started to go down hill. I tried mtx alone and didn't see a big improvement and now rheumy has added Enbrel. I don't know yet how that is going to do since I have had only one dose so far. Next one this Wednesday. It really is a trial and error thing trying to figure out what works and what doesn't. Alos, what works well for one may not for another. So just hang in there and never give up. Keep moving, Keep moving and Keep moving. The best you can that is. Have a Blessed Day So true you always need to research and do what is best for you. I am such a scaredy cat about trying anything new. Adding a vitamin is a great idea. I do take vitamins, calcium, flax oil and MSM Glucosomine daily. I find weather changes to be painful. I don't care if it hot or cold, or dry or wet, as long as it is constant. It probably is barometric pressure change I'm feeling. I'm glad to be in AZ where it is sunny and hot or sunny and not so hot. We do have a monsoon season July, Aug, and Sept when the weather changes frequently. I needed a burst of pred to get through this year. My rhuemy said he has seen a lot of weather related suffering among his patients - he has become a believer. He calls it the whinney season.
But many people who have had it a long time will tell you
otherwise. I can always tell when it is going to rain or snow,
because my joints will hurt a lot. Even if I am not currently in a
flare, my joints will still hurt while the weather is changing. My
peds rheumy said that there has not been any research to that
effect, but that doesn't mean it can't happen. Also, when I
moved down south for college my symptoms improved. The
dose of pred you are on seems kinda low to me. I was always
started on at least 40 mgs for flares. Your doc might need to up
it if it is not working. I am not on any of the other meds you
mentioned, but I know plenty of people on here are. I'm not sure of the weather question, at least for myself. All I know is that I've had flares during good weather and bad. I do admit that if the weather is really cold, the flares seem worse (I don't like cold). Secondly, the choices you make on meds are very personal and the exaxt cocktail of meds seems to be very individual. Do as much homework as possible. I went straight to the biologics (Enbrel) very early on in my RA. There is a lot of new data that concludes that the more aggressive the treatment during the first few years, the better the long-term prognosis. And if you read the biologics veiw point or even John Hopkins website, you'll find that the biologics seem to work better w/methotrexate (MTX). I personally can't take MTX because it caused by liver enzymes to increase (very common). Best of luck on your journey. You will find many good folks here with a lot more experience than me. So take your coat off and stay awhile.When I was first diagnosed, I would have sworn up and down that the winter was much worse for me. However, I was on no medication at the time.
I also have pretty bad raynauds syndrome. Two of my fingers will be ghost white, in blotches, and its pretty painful
The side effects always make me miserable!Welcome Phatgirl2
When I was first diagnosed in late July the Doc put me on 20MG of Pred once a day , then wrote scripts for 7.5 Methotrexate and 50mg shots of enbrel each once weekly.
I am stil on the MTX and enbrel and down to 5mg of pred.
I havent had any real pain to speak of since the end of
July. I'd say these meds are working.
Last couple of weeks I had been experiencing cold symptoms such as chills and lite fever and me and the Doc are hoping it was just a cold my husband brought home and not the medication. These medication screw up your immune system a bit. However it is the fall here in the midwest and everyone is catching a cold.
I feel lousey the day after I take the meds since ive been down to 5mg on the pred but all the pain is gone and I couldnt be happier.
By the way, I chose the meds I am on. I asked the Doc if I could try these first and he agreed.
Good luck with your treatment. There are a lot of people here with answers. RA and the meds are sacrey but you'll find friendship here and people who really understand.
barb
From what I understand about the weather connection:
It's thought that the barometric(sp) pressure is what causes symptoms. The change right before a snow, or rain, or bad weather is generaly quick, and felt by some. But not all. This goes across the board though, not just for RA patients. People with sinus problems, or inner ear problems sometimes feel the changes and have symptoms of their problems right before a weather change too. So basically, some people are hyper sensative to barometric pressure changes, and some aren't. If you happen to be one of the people who IS, and you have an illness...it can affect it. Makes sense if you REALLY want to think about it. The pressure pushing down on you is what your body is noticing, and it just transfers it(??? thats a really basic run down, its more scientific than that...) says if you're that sensative, you probably have some sort of motion sickness as well. They tend to run hand in hand. I personally think it's all inner ear related, as I have issues with that...I won't go into detail unless someones curious. LoL But just so you know! You're not crazy, it is an accepted idea by some, and if you feel bad before weather change...well...no one can call you a liar. You know how you feel! :)
Thanks for the idea of a vitamin. I need to add that to my
mix. I am not sleeping well because I wake up in pain. I'm
on a small dose of pred that has helped a wee bit, it takes the edge
off. It is really important for me to get my rest in
general.
I think I'll start keeping a log because it seems like the days run into each other as far as symptoms.
I also want to clean up my diet some. It's not horrible, but it's
not as good as it can be. Maybe that will help me feel better.
Rocxy, I'm hesitant to start placquenil because I already have HBP, and
don't want to add something else that can damage the eyes. I've
done a lot of research and everything seems to have it's pros and
cons. It also comes down to what works for me personally.
It's nice to have others opinions on what works for them.
Thanks, have a great day!
Phatgirl2
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