Out of control

I have just been perscribed methotrexate as I have severe Inflammotory Arthritis and no other meds are helping. It is getting worse by the day and I have no relief at all. Im so scared about taking this drug and my Rhuematologist did say not to panic about it as you will read some very bad things about it. Well yes I have read some very scary stuff and I was wondering if anyone could let me know if they are taking this medication and what sort of relief they are having from it or side affect!!

Thankyou

[Painful1972]

Is there noone that has been perscribed Methatrexate????

[TrudieC]

It's been rather quiet on the forum this weekend.  I hope you'll get someone answering on Monday.

[Painful1972]

Thanx TrudieC would be really keen to see if anyone is or had taken it!!

[kmil1999]

I'll bump this up in hopes someone sees that can help.  I know we are having one more day of great weather today.  Everyone has probably been doing all they can outside.  It's great to have a few nice days in November here.

I know it doesn't help you when you are needing answers!  Hang in there, someone will come along soon.

Best Wishes,
Karen

[Painful1972]

Well I was hoping to get some feedback for this medication, I went ahead and started it and today will be my 2 dose as its only taken once a week. So far the only side affects that I have had is loss of appetite, which has lead to a loss of 3kgs. As for the pain side of things no difference as yet because the meds dont work straight away apparently. I did however have two really good days this week which is amazing for me at the moment, but I would say that is was a coinsident that it happened. Still would like to hear from anyone taking Methatrexate.

[babyde]

Sorry Painful,
I just came across your post,and yes I have taken Methotrexate. The doctor stopped it afte a 6 weeks because I developed a bad rash on my arms and legs and also delveloped moth ulcers. It never helped my pain, as a mtter of fact my pain was worse. I also lost my appetite which I like because I was able to loose more weight. It also gave me diherrea. I am on Cellcept now after the methotrexate and it seems to be helping more than any other drug we have tried. Always try the meds the doctors want because it does take trial and error to find the right combination or the correct cocktail. How else will you know. If you get any adverse reactions then you know it's not for you. Hope you feel better. take care and good luck.

[southygirl]

I too have been on methotrexate and have had to stop it,but I took it for more than 9yrs,only in the last year I started to have some dodgy blood results and my rheumy didnt want to take me off it at first as it was helping me,but he has now stopped it.If you take your folic acid every week and have your blood tests regularly, you should have some relief. Everyones different some can tolerate it some cant, I think it takes up to 6months to work properly,anyway hope it helps you if not there are other drugs you can try.

[Simpleman74]

Tell me painful,,,, Where is the most pain?
And where do you have tightness of the muscles?
And do you have any other disorders?

[Painful1972]

Thanks for the reply everyone Ive now been on it for 3 weeks so far still only the burning of the feet and no appetite. Ive lost 5kgs in 3 weeks wich doesnt bother me because I need to loose alot more!! Im really hoping that I can give it a real go and im deffinitely taking my folic acid and having monthly blood tests. Im glad babyde that there other drugs to try I guess I kind of left my doctors office feeling like this was it if it didnt work then I was going to live like this for the rest of my life. Are you trying something else instead of the methatrexate southgirl???? It"s good to know that you can take this drug for some time if it works for you. And unfortunately ive learnt that no drugs work instantly :( thats the hard part.
My pain simpleman74 is located mainly in the groin and shoulders that pain is there 24/7 never stops. Then the other pains are in the wrists, neck, upper back, lower back, knees and toes, so really in all the joints. I can put up with the other but the groin and shoulders very often reduce me to tears. The other disorders I have are PCOS which makes me insulin resistant, hyperthyroidism and I also suffer from depression / anxiety after my husband passed away. Thanx again everyone for the replies is so good to see the results that others have.

[Simpleman74]

Reaction to polyester causes reaction wherever the polyester is more. For instance, the panties being 25% polyester or so, while your other clothing is all cotton.
This would explain the groin area being that way.
And also, it reacts to threads in cotton clothes for they have a cotton polyester mix. For a single strand of cotton thread standing alone and not woven with many other strands is too weak to hold without breaking. So the use a mix for polyester being very strong. And this my dear, is not very much surface area. Less surface equals less reaction. And most times that little bit of contact area with just 40% polyester in the thread is not enough to cause any issue for the immune can fight that off. However another big factor is how lightly it touches you. If light, it is hardly even noticable. Even for me. Unless it is a lot of poly. Thus the weight of the shirt pulls it down tight to your neck. And when you put other shirts or coat on top of that, it makes the poly in the thread around the neck and from the neck to the shoulders "as the stitching runs" and therefore causes tightness in the neck and the tightness spread downward from there.
Another place where the thread touch more and there is little fat to provide a barrier between the allergen and the muscles and veins, is the lower back. The waistline of pants being tight to the body. So tightness can go from there and spread upwards, while the neck area spreads downward.
The tightness in neck area pulls the shoulder blades upward causes tightness just below them also. If I wrote a book on all the effects, and different parameters and conditions of polyester allergy, with all the details, it would be a very very long book. There is so much to it and combined with the varying degrees, it get complicated. Not to mention that if the contact is small enough and touches lightly or once in a while "like side of pant legs" then there will almost always "except when run down immune" no reaction of any sort!

As for the bottoms of your feet. Polyester soles.

To sum it up. If you ARE allergic "and most of us are but so little no reaction" to polyester then You must wear cotton clothes.  But your footwear is polyester. And the bottoms react for all your weight pressing down on it making this a reactive area. Can make your feet sweat a lot, and then dry out, then sweat and dry out. Over time this dries out your skin. And dry skin reacts to poly much worse too.

Your panties have polyester in them. And thus that explains that. Or just the thread if cotton are tight to your skin there. Plus it had elastic bands. Which can be allergen. Most people allergic to poly are to latex as well.

And finally your back and neck is from your threads being tight against you.
This is if you are allergic in the first place.
When your husband died, that was surely a very hard time. And ran you down bigtime! That is when the allergy will attack you, and you will start reacting. Once you do, the reaction alone can keep you down. However, the body can get on top of it usually if only threads, and all cotton clothes.
You ever hear a doctor say to someone with a rash "even when he says it is fungal or eczema or anything else" to wear loose cotton clothing? Google "rash+loose cotton clothing" and you will see this is a common practice. And they think it helps because it is more softer on the skin and looseness allows the skin to breath and rash to dry out. So they wear loose cotton clothing it yes it gets better. But it is actually because of the reasons stated above. Allergy to poly. and loose is better for that too.

[babyde]

Is arthritis your only diagnosis, sometimes there can be other disorders that can overlap.
Like Fibromyalgia, or ostearthritis, or even an autoimmune disorder which may be also adding to all your pain in those areas. I hope methotrexate works for you. Don't worry about the drug so much, you should be monitored monthly with blood test just to be sure that the methotrexate isn't harming your body. I had to but I was only on it for less than 2 months, now with Cellcept I am still be watched by blood test. Good luck and Happy Thanksgiving.

[Painful1972]

Wow simpleman74 I must admit that I have never heard of this, I am deffinitely going to google this and do some research it sounds like you have done alot of this yourself. Babyde Ive been tested for a few things and they thought I had Fibromyalgia at first but ruled that out, all my blood tests come back negative for RA Ive had lots of blood test and lots of scans and this is what the Rhuematologist came up with. Somedays I think the meds are going to finally start working only to wake the next day im in extreme pain. I would have 1 good day out of 7 and on the good day the pain is still there but more tollerable. Have you had good success with the Cellcept??? And would an autoimmune disorder show in the blood tests??? I get so depressed with the pain sometimes because its really effected the quality of life.

[kmil1999]

What a coincidence!  I posted on your question to bump it up earlier because I had no idea how else to help.

Now, I was just prescibed methotrexate myself.  So I am in the same boat.  My rheumy prescribed folic acid too.  She said that it helps to prevent some of the side effects of the methotrexate.  However, i think you are supposed to take it everyday and she never told me when the best time to take it is or if it interfers with any other vitamins or meds.  

I haven't started yet because this is our Thanksgiving Holiday (losts of good food) and I didn't want to be sick, just in case.  So, now I will be learning from you!

One thing I wanted to add, I was diagnosed with RA this week.  However, my rheumatoid factor is negative.  This had thrown off my docs for a veru long time.  The rheumy that I went to took a test called Cyclic Citrullinated Pep IgG.  This test (it's a newer test. been around 6-7 yrs. I was told.) was highly positive for me.  I understand that it is very specific for RA and that is how I finally got diagnosed with it.  Maybe you could get your docs to look into it.  

Continue to update on your methotrexate experience.  I think I will open a new question on timing of folic acid.  

Hope it helps you also,
K

[Painful1972]

Hi K wow that is a coincidence, sorry to here you have RA but happy for you that you have a confirmed diagnosis. The folic acid is only taken once a week the day before you have to take your methatrexate. As far as I know the folic acid shouldnt react with any other meds as for the methatrexate im unsure but all I can say is im like a walking chemist at the moment and it hasnt affected any of mine.Im about to take my 4th dose and so far so good, I will have to say though that is hasnt helped the pain yet but as ive said before I know the meds dont work straight off so im not giving up yet. The sick feeling I was getting as slowly gone a way so thats good.
Thankyou for the suggestion of cyclic Citrullinated Pep IgG testing I am going to my rhuematologist in a weeks time so I will deffinitely be asking her about this test. From what I can recall I have not had that test done before. I hope your journey on the methatrexate is a good one and you will also have to update us on how you go.

Leanne

[kmil1999]

My rheumy gave me a script for the folic acid because she said that it ends up being cheaper that way.  (over the counter is more expensive - go figure, and she said you are assured of the appropriate mg.)

The bottle says to take on tab daily of the folic acid.  Of course the methotrexate is weekly.  That is why I was a little confused.

Thanks for the update, keep in touch
Karen

[babyde]

Hi, I hope you all had a very nice Thanksgivning. I just wanted to add that Mehtotrexate side effects sometimes will lower your immune system, therefore the folic acid is to build your immune system up. Also what you get over the counter is not as strong per dose as from a prescribe dose. Is yours 1 mg each? I also had a high CCP IgG and it was indicative of my RA and Lupus.
Painful, Yes the Cellcept really seems to be working, except when I over use my hands or over do it, then I start to swell alot and have more pain.
I tested negative on my RF and the doctor said that didin't matter because my joints sure show it, but I tested positve on other antibodies. My mother had Scleroderma for over 15 years and she tested negative everytime and on every antibody she was ever tested. She was always so ahsame of the way she looked because her skin did look like someone with Scleroderma, but she always tested negative. GO figure, even my doctors can't explain that one to me.
Painful your pain really sounds like Fibromyalgia. There are no blood test for it only a trigger point test. I had alot of the same pain and still due but at a more tolerable level since my doc cganged me to Cellcept, but I am also on continuous pain managment of 100mcg of Fentenyl dermal patch. But I have noticed less swelling and less hottness and redness on them.  I broke out in a rash and fever blisters and I also noticed more hair falling out thats why I had to stop Methotrexate
Keep in touch

[babyde]

One more thing, google WebMD. I get weekly news letters regarding RA and they are very helpful. You should also sign up for them. Or if you would like and didn't mind give me your e-mail address and I can forward you the latest. They have some very helpful articles and answer many questions. You may contact me at ***@****

[babyde]

Well it didn't go through so lets, I quess you will have to google it. I won't be able to forward the news letter.

[Painful1972]

Sorry havent been on for a week, there seems to be so much going with christmas coming up. Thankyou babyde I will google it as your email didnt come up. Mmmmm Karen Im only taking my folic acid once a week, Haha now im wondering if I havent got it wrong with that. Ok just checked my bottle and im on 5mg once a week. I still find it strange that we show up negative for these forms of arthritis but my doctor said that I am deffinitely suffering from arthritis and not fibromyalgia like we first suspected. As my bone scans show enthasopathy all throughout my body. I did do the trigger test for fibromyalgia babyde and I didnt react to any of the points as this was what they were thinking straight off when my GP sent me to the Rhuematologist. She told me that I would not have enthasopathy on scans if it was fibromyalgia. Im taking my dose of methatrexate tomorrow but with a little hesitation as the my last dose I had extreme pain in around my liver. It had me doubled over for awhile but then stopped so I didnt worry about seeing my GP, I also had my blood tests done this week and havent heard back any bad reports so I guess everything is good there. I think I noticed a bit of relief this week but its strange because ive also had extreme swelling and redness in my feet and the pain has travelled into my lower back which makes it extremely painful to sit sometimes. So im probably not making sense in the fact that ive felt better but feel as though the pains are taking over more part of my body. I find it all so confusing at times. Hopefully I can ask my Rhuematologist some more questions now that I have a treatment plan.