Rheumatoid Arthritis Support Group

I started plaquenil April 14th. Because of a mistake from my pharmacy, I was only taking 1 pill a day. I caught the error about 3 weeks in and now am on 2 a day.

Since starting the plaq, it seems my RA is progressing. I know it takes 4 to 6 months for the plaq to work and feel results, but it seems that my RA is progressing in spite of it. I have new pains and more flares in my hands and wrists. My knee is now starting to swell. I am being awaken by pain in my knee, fingers and wrists. I had none of this prior to plaquenil so I can only assume that the RA is progressing.

I am so torn because my dr wants me to start methotrexate but I am relunctant. Part of it is vanity, I don't want to lose my already thin and fine hair, part of it is the horror stories I have heard about it. I feel I need something more to stop the progression but I'm scared.

Has anyone not taken mtx and gone with different drugs or is mtx the norm for all RA patients?

Should I wait a couple more months and see if let the plaq build up in my system to see of it takes care of the pain or do you think an appt with my dr is in order?

I'm just so torn and so so scared....I hate this.

I really couldn't help you decide. I am sorry you are having such a bad time with the RA. I am not on any meds for RA because it seems I am allergic to the world! It is not vain to not want to lose your hair, when that happens it can make things worse because you can become depressed. But think of it this way, you may lose your hair but you will hopefully save your mobility in the future. Don't let the thought of hair loss scare you, there are products for that too. Think of your future self, do you want hair and be crippled or would you prefer to maybe lose the hair and have more ability to move and do things you love? It is always scary to hear or read side effects, that doesn't mean they will happen to you. Weight the pros and cons of MTX. in the end it is all up to you, just know that no matter what this group will support you. Good luck

I'm on methotrexate (oral) and am weaning off prednisone. I was terrified, too, to go on mtx because I had read all the horrible side effects. It was hard not to be scared I'd get them all!

My first 2 doses of mtx were horrific--nausea, even greater fatigue than the RA itself, depression (although that may not have been the mtx but because of what I was experiencing), and total nonfunctioning the day of the dose and lethargic the day after. I felt like I was just starting to recover when it was time to take the next does. And to think I'd have to stay on it so long before there was any chance of relief! I was ready to call my rheumy to ask to go on anything else.

But then the folks in these forums helped me figure out to take the dose in the evening on a very full stomach. It has made all the difference in the world. If I'm having those immediate side effects, I'm sleeping through them and don't know it. My RA is so much better than when I started mtx, I'm hoping to stay on it as long as possible before having to move to another drug. It's cheap, effective, and (with the new schedule), no side effects.

I have thick, wavy hair but haven't noticed any unusual hair loss. My hair did get really dry, brittle, and straighter but these people helped with that, too. I tried the VO5 extra body and it's really helped with the dry and brittle. Unfortunately, it looks like the straighter is here to stay. A very small price to pay!

Joann

Post edited by: JoLoBa, at: 06/01/2012 12:59 PM

Hi Jlynne

I have taken Plaquenil in the beginning of my treatment several years ago.

I took it for about three months, 2x a day, but it did not work for me.

I was then put on prednisone and methotrexate and prescription vitamins to replace the minerals methotrexate depletes my body of.

Believe me I put off taking meds because of the nasty side effects, but when RA just about rendered me helpless, it was a rude awakening and I needed help with everything, I could not even take a shower by my self and needed help dressing. I could not hold a blow dryer or a toothbrush.

This all happened despite the increase in methotrexate and prednisone.

I have been on a drug combo of methotrexate, and biologic,pain med, and prescription vitamins ever since.

Its was really a tough decision for me. I felt I had no other choice but to take my chances taking the meds.

You should talk to your doctor to see if there are any other options, but I think methotrexate is a standard med that rheumy's prescribe in combination with other meds that usually helps RA to varying degrees.

If you did try the methotrexate and also took prescription vitamins , maybe it would help with your concerns.

I did lose a little hair, but not much too be concerned about, and I have fine hair, but a lot of it, so I have been told by the hairdressers.

Good luck in your decision....

Jlynne, I to was really scared... I read all there was to read about mtx which scared me even more. But what is the scariest of all is the thought of RA's progression, and not being able to do things I want to do. So also with the help of these forums I started mtx 6 weeks ago and take it on Friday nights before bed with a snack. I sleep through any side effects, and am just really tired on Saturdays. So far so good on no hair loss, am also using VO5 extra body. I also like Joann have wavy/curly hair and have noticed it is a little straighter then it was.... all good for me I hated all the curls, hoping it stays straight LOL

Of course no one can make up your mind, you just need to not only research on the web, but read all you can on the forum from those that have done it and go from there to make up your own mind! I am scared of shots... so I really hope this works because my next med will be in an injection form! YIKES!

Cindy

I have been on MTX from the beginning. I also take,Plaquenil and folic acid (red

I'm just glad plaquenil and methotrexate exist. I, too, was worried about the possible hair loss, as I went completely bald back in 2005 when I had Stevens Johnson Syndrome. (Lost most of the skin on my hands and fee, too.) After the SJS, I started taking 2000 units of Biotin a day to help my hair grow in faster. When I started MTX, I was on the oral version, and had awful gastrointestinal side effects. After a month, I switched to self-injections. I was also on a hefty dose of Folic Acid, Vitamin D, Calcium, and B12. I don't know which one of these if not all of them helped my hair. I didn't lose more than 20 hairs total, and they are already growing back. Since Oct 2005 and June 2012, I have grown 28 inches of hair and can now wear it in all kinds of buns and braids. I may not be able to take care of it at some point in the future, so I'm going to enjoy it while I can!

Was really scared of MTX after reading the side efftects. Stared at that bottle like posion for two days before starting it. The nausea has been the main problem and the loss of my voice. Have not lost my hair. Even with the meds there are ok days and then there are uhoh days. Still don't understand the flares with the meds. RA leaves me confused and depressed. Have trouble making decesions because I have no idea how I will feel when the day comes.

kjv1956

MTX is the gold treatment for RAD. Many folks do well on it. Some don't.

I took it for about a year, both oral and shots. I like the shots much better. But, it didn't help me enough so off it I go.

As with lots of meds things like hair loss can happen. Not will happen, but could.

RAD is a serious disease. It is chronic, progressive, and incurable.

The only chance we have to have a good quality of like is control it.

Control it not cure it.

The scary meds may very well do this. All we can do is try. See if there is a difference in our life.

How wonderful when it is!

kj, I don't think we will ever have bunches and bunches of running days of feeling well.

Again, all we can do is control the disease. Only with remission will we be RAD free.

Remission...a lovely word.

Hugs

I have been on MTX 2 different times. The first time I had SOME noticeable hair loss, but the Folic Acid did seem to help. Then they put me on other stuff for 2 years, now I am back on MTX. THis time I have had no hair loss, so maybe its something our bodies need to adjust to? Idk.