Hey all. I've been busy so I haven't posted in a while. I had my first Rheumy appt. since being diagnosed with Sero-Negative RA and being put on 400 mg Plaquenil/day. By this follow-up appointment not only my fingers and wrists were effected but I had also been having major knee pain in both knees when walking, sitting or lying down. My Rheumy also noticed that my index finger on my right hand is starting to curve towards my pinky and my middle finger on the same hand is beginning to lean towards and slightly overlap my index figer. My Rheumy did more bloodwork at this appointment and the results of all of my bloodwork came back high positive. He now has gave me an official diagnoses of Sero-Positive RA. While him and I both knew that this was RA the Sero-Positive RA diagnosis was still somewhat devistating. On one hand it was sort of a relief that my bloodwork now shows 100% positive for RA, as it reinforces that fact that I'm not crazy and I am in fact taking medication for a 100% verifiable reason. But on the other hand, it was kind of a depressing wake up call that I'm going to have to adjust my lifestyle a bit to deal with this disability. I spent the last day after getting the news fairly depressed. I really don't know why, as I knew that this was RA anyway. When my Rheumy gave me the results he gave me an order for hand and wrist X-Rays, as he said that we need to establish a base-line for bone deterioration and deformity. He also said that we now need to be more aggresive with treatment and he wants to start me on MTX @ a dosage of 4 pills once per week in conjuction with the Plaquenil. As this all came to somewhat of a shock to me I asked him if I could research MTX first before giving the OK to begin more aggressive treatment. My Rheumy agreed that it was a good idea to do research but reinforced the fact that he didn't want to wait too long since he could see visible damage occuring already and RF counts were high. He said that he wants me to make a decision within the next (6) weeks. He also started me on Relafen @ 1000 mg/day.
For those of you on MTX, what sort of changes would you recommend that I make in regards as to planning for medication times as to not effect my ability to work, etc.,?
Below is a link to my previous "Sero-Negative" journal so I can keep all of this info linked together in one subject:
http://www.arthritisinsight.com/forum/forum_posts.asp?TID=57 58&KW=sero%2Dnegative+
Jen101,
Thanks for the advice. I don't have a needle phobia so I think shots would not be a problem. I wonder if he will let "me" choose between shots and pills? I'll ask him is shots will be ok when I see him in a few weeks.
Hi Ta2d!
Congrats on graduating to positive (I guess
Sorry, not much help, just wanted to say hi
CinDee
Take heart- giving something a name really does not make it better or worse - the thing is what it is. (I've been sero-neg for 30 years yet there are days I wonder if it is really RA - talk about an ostrich!)
I didn't do well with mtx - it made me 'icky' gut wise for 2-3 days each week. But is is the drug the rhuemies have the most experience with, and it is effective for many. I would try it before arava. I wish I had known about inj mtx because I think I may have been able to tolerate it. For now I'm tolerating arava fine, but if I need to change some day I'm going with the inj form.
Hugs.
I've been on MTX for years. I now take 25mg weekly and manage very well. It's been a great medication for me with very few side effects.
Although what Jen says is very true......it's just as likely that you'll manage just fine on the pills and you might not have to fool with the shots. I injected Humira for two years and hated doing the injections. Of course everyones different; but if given the choice I would always choose pill form over injections provided my body reacted well to it in the oral form. That's not possible for some; but there are many of us who take it without any problem at all.
Good Luck!
After being in a constant flare for almost (8) weeks I'm finally having a good day today! I woke up with almost no pain and almost no stiffness at all. I'm going to try not to get too excited about today being a good day because I know that most likely it won't last. However, after (8) long weeks it is nice to finally feel almost back to normal, if even just for one day (too bad is has to be a work day). I've been on Plaquenil for (14) weeks so maybe it is finally kicking in. I had (5) good days in a row back in January and was almost devistated when I flared up again. I'm slowly learning to deal with the ups and downs of this disease as I know it comes with the territory.
I go back to my Rheumatologist on April 10th and I need to let him know what I decided on his recommendation of adding MTX. He wants to add in 12.5 mg of MTX once per week and feels that even if the Plaquenil is working that it will be to my benefit to add the MTX as soon as possible. He says that while the Plaquenil and Ralefen that I'm taking will help with inflammation, that neither of those will alter the progression of the disease. He says that MTX, however will. After much consideration I feel that it's worth a shot if it can help ensure that I have many more days like today.
The pill form is more commonly used than the inj. 12.5 is a lighter dose. I hope it does the trick for you. Best Wishes.You'll never know if it helps if you don't try. I have read on this board alot of people take mtx and benefit from it.
Good luck and take care
Hi Ta2d.Thanks for the replies. I'm going to request the injectable version of MTX as the Plaquenil already gives me mild stomach upset even though I always eat something when I take it. I really don't want to add fuel to the fire with another drug that is almost guaranteed to cause more stomach upset, especially since I travel a lot for work. I don't think the Rheumy will care one way or another, as long as I agree to take it. Even though 12.5 mg is a light dose at 25mg/ML I should be able to just take 1/2 ML injecatable to get the 12.5 mg dose.
I had my 3rd appointment with my Rheumatologist the other day which also marked 15 weeks of treatment with Plaquenil for my RA. He went over the baseline results of the x-rays taken of both of my hands. The x-rays show no erosions at this time, however they did show generalized osteoporosis and osteopenia in areas common with the effects of Rheumatoid Arthritis. He also noted visble swelling and redness of my fingers, wrists and elbows. He asked me what my decision was regarding starting MTX in addition to my other RA meds. I told him that I would give it a shot but that I was only willing to take the injectable version. He seemed shocked at first and then said that he was 100% ok with giving me the injectable version as long as I was ok with self injecting. He said that injectable is a better way to go because you get complete absobsion of the drug and therefore, it's easier to gauge dosage adjustments. He said that the only reason he doesn't suggest injectable MTX from the get-go is because the thought of self injecting scares most people. He wants me to wait until I'm over my cold before I start the MTX. He also did blood work to get a baseline before starting the MTX. The plan is to start next Friday providing my cold is gone......and of coarse I don't chicken out. The thought of injecting doesn't bother me at all but I have to admit that the pamphlet that comes with the MTX is scary.
Ta2d it sounds like you had a good appt. and your Dr. is taking care of your needs. You will do fine with the injectable MTX. I just did my 2nd one right after injecting Enbrel. I sure hope that it works for you. My joint damage stopped on the meds and I think that is what we are trying for.
Well despite a nagging cough and stuffy nose that I believe is due to my allergies, I took the plunge and took my first 12.5 mg dose of injectable MTX Saturday evening. The injection wasn't bad at all, I couldn't even feel it. As far as side effects from the MTX, the only things that I have noticed so far is that I sweat profusely while in bed during the night on the night of the injection (it was only 60 deg in the house so heat wasn't a factor), very mild stomach discomfort and mild lower back pain and fatigue the next day. Two days later (Monday), I am experiencing no sides at all!
Also, I wanted to ask, does anybody know if Plaquenil can cause a stuffy nose and cough? This has been going on for about (3) weeks. I haven't run a fever, my only symptoms are a nagging "tickle" in my chest that causes me to cough and a stuffy nose. Again, I assume it's just allergies but I wonder about the possiblity of it maybe being from the Plaquenil.
That is great!!! I am also very tired the day after my shot and will sweat too. It goes away the following day. I don't have any stomach upset at all tho.
I am not sure about the stuffy nose and cough with the plaquenil. Might want to call your rd and ask about that.
Glad to hear you have your first injection overwith. Now they will be no problem and I hope that it helps.I may have spoke too soon. I mentioned in my post about taking my first MTX injection and having some mild stomach discomfort. By discomfort I meant issues with gas pain. Yesterday evening the gas pains got worse. I know that it's a gas issue because right after I have the pain I'll belch or release the gas by other means...lol..the pain goes away.
Does anybody on the injectable MTX and Folic Acid have gas pain issues?
I called my Rheumatologist and the nurse stated that the issue is not directly related to the MTX but rather to the folic acid supplementation. She asked on a scale of 1 - 10 what my gas pain was and I told her 3 - 5. I told her that I could deal with the issue at this point but I just wanted to make sure that it wasn't a serious problem. She said that it can be and said that she'd speak with the Rheumatologist and call me back with how he'd like me to proceed.
Yep, I definately spoke too soon regarding no side effects with the injectable MTX. My stomach is tore up. I'm not sick to my stomach I just have stomach (gas) pain and cramping. The pain and cramping gets worse if I eat, so I'm limiting my food intake for now. Also, all of my joints hurt during the night last night and my muscles are aching something fierce.
My GP gave me some Prevacid and said it would help with the stomach issues. I hope that it does and that this body aching goes away. If it's going to be like this every time, I'm going to refuse to take the MTX and look for other avenues for meds. I'd rather have my hands and wrists hurt from the RA than not be able to eat because of stomach pain and this muscle aching.
Blessed,
Thanks for the reply. My Rheumatologist just called and said that he doesn't believe the injectable MTX alone is causing my issues. He said that while it is possible he suspects that it may be a combo of all the meds. He wants me to drop the 400 mg Plaquenil and 1500 mg Relafen for now and just continue with the MTX and Folic acid. He also said that Folic Acid has been known to cause the gastro issues (the internet confirmed this) so he said that I should cut my folic acid dose in half and work my way up over time.
I suppose it's worth a shot.
What's worse is that in (3) hours I'm due to jump on a plane with my son and travel 1900 miles to Phoenix, AZ to visit my family. A 4.5 hour plane ride is gonna suck with these stomach issues...lol. I'll have to make the best of it as the tickets are unfortunately non-refundable.
Take Care,
Ta2d
Just wanted to update on the medication situation. Per my RD's advice I dropped the Plaquenil and the Relafen. For the last (3) weeks since dropping the Plaq and Relafen, I've been taking my injectable MTX @ 12.5 mg/week, 1 mg Folic Acid/day and 1 Prevacid daily and I have had no more side effects other than fatigue the day after my shot!YAY!!!!! Glad you are doing better!!! I am completely wiped out the day after my mtx shot.
Soooooo how was your trip? Warmer than where I am I hope!! LOL! Altho today is nice 76F.
Grammaskittles,
Thanks for the reply. The day of the trip I was miserable from the side effects of one or a combination of the meds. By the next day I was doing much better. The temperature in Phoenix was really mild and it didn't reach over 85 degrees the entire time we were there. Since the humidity was only about 10% it was very comfortable! I'm glad we went when we did because two days after we left the high temp in Phoenix hit 110 degrees. That would have been miserable since the MTX seems to effect and lower my tolerance to heat. Unfortunately, even thought the climate was much different than central Illinois I still experienced all of my symptoms (finger and wrist joint pain). However, it was good to get away and spend some time with my son. It also was good for him because he is the middle child and he got some one on one attention away from his two sisters.
Take Care......Ta2d
Hi Central Illinois from So. Illinois! I hope by now you have adjusted to the Mtx and to doing without the Plaquenil. Since you seem open to new ideas and are worried (rightly so) about the side effects of Mtx, I just wanted to mention AP, which is low dose antibiotic treatment which has helped many people. Those not ready to go off Mtx, Plaq or pred stay on it until they feel than can go with AP alone. If you want more info, two good sites are www.roadback.org and www.rheumaticsupport.net. Good luck to you whatever you decide to do. All the best, Pat LOL!! I am originally from the west bubs of Chicago! I went from flatlander to cheesehead tho lol!!!I just had my 4th injection of MTX @ 12.5 mg last week. I have to admit that I am seeing more relief than I saw on just the Plaquenil. My hands and wrists used to swell and get stiff from just sitting in the chair watching TV. This past weekend we went and saw a 3 hr movie and experienced only very minimal stiffness. My morning pain and stiffness has also improved substantially and only last 15-20 minutes max as opposed to the 2 - 3 hour stiffness before. I am still having some joint pain in my fingers and wrists but nothing like what it was before the MTX. The only symptom that has not improved while on MTX so far is the chronic fatigue. I'm still finding it hard to stay awake and fully alert while at work.
Does MTX ever help improve you energy levels, or does it just help with pain and swelling? Any advice on how I can improve on my energy levels?
Wow!! So glad to hear you are doing so well!! That is fantastic.
Fatigue is the beast I am trying to outwit also. Eating right helps a whole lot. If you can take small frequent breaks from activities that helps a little too. I know that can be hard at work tho. I rest when I can. I try not to push myself. This may sound silly...but keeping yourself hydrated works well too. Especially the day before and day of the mtx shot. Maybe also try a multi vitamin if you don't already do that.
I am so glad you are doing so well!!!
Grammaskittles,
Thanks for the reply and the advise! Hydration is not a problem. All I drink is water and I drink a gallon a day. I'm on a whole food diet so I do eat right and I do take a multi-vitamin. It appears as though maybe I'm just stuck with the fatigue then...lol. Right now I've been going home from work at lunch and taking a power nap which usually helps me get through the day, but some days I'm so tired I honestly have trouble functioning and staying awake.
To make matters worse I think that I'm getting a sinus infection. I see my RD this Thursday, so I need to ask him if I should stop the MTX to let the infection clear my system.
Take Care,
Ta2d
Ta2d I'm happy to hear that your med problems seem to be straightened out. I too inject MTX and it keeps the swelling and stiffness down but oh the pain.
Take care.
I saw my Rheumy for a 4 week follow up since starting MTX. All of my bloodwork came back fine. However, for the past two days in the mornings I had been coughing up green phlem and he said my chest sounded a little rattely so he told me to stop the MTX and setup an appointment with my GP to start on some antibiotics. He told me to resume the MTX once my cough was completely gone. He also told me to re-start the Plaquenil @ 400 mg/day but to leave the Relafen out.
Also, since back in February I've had a soft, pliable raised lump about the size of a nickle on my left knee. I always just thought it was a vein coming to the surface so I never mentioned it. Curious as to if this could be RA related, I pointed it out to him yesterday. He poked and prodded on it a bit and said that this was indeed a Rheumatoid Nodule and that the MTX could cause these to pop up. I told him that I have had this for 5 months and I've only been on MTX for 4 weeks so it couldn't be the MTX. He then said to keep an eye on it and asked me to come back in 4 weeks. He said at the next appointment he discuss the significance and risks of Rheumatoid nodules with me. He asked his assistant to go over this with me a little bit before I left my appointment but things got sidetracked and it never got discussed.
What is the significance of a Rheumatoid nodule with RA? What risks would there be?
Ta2d
For the past month I've been experiencing pain and stiffness in my neck and upper back in my "lat" area in and around my shoulder blades. When I wake up in the mornings this area has been very stiff and it hurts to look down or put my chin to my chest. Like with my hands and wrists a hot shower loosens my upper back and neck up but after I cool down the stiffness returns. I've visited my message therapist who specializes in deep tissue, myofascial release and trigger point many times over the past month for this and she said the the muscles are all knotted up and she hasn't been able to get the muscles to release. She says that with "RA" you can get inflammation in the muscles in your upper back and around your spine. She beleives that this is the cause of my back and neck problem. I plan to ask my Rheumatologist about this when I go back to him in two weeks. She has suggested that I visit a chiropractor to see if they can help but I'm leary to go and get twisted around.
Until then, does anybody know if "RA" can cause inflammation of the muscles in your upper back and neck as my message therapist has indicated?