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Posted 12/21/2010 3:49 AM (GMT 0)
Those of you who post regularly know my story of a very severe onset that lasted 3 months with total disability. I changed doctor's and this one put me on a mega dose of prednisone along with my MTX and got me right again. So right that now when I come in with good blood results he poo poo's all my complaints and makes them out to be non RA related.
For instance because I do not have overwhelming all over stiffness in the morning- my daily pain levels 3-5 and my stiff hands are disregarded. When I complained of fatigue he told me to ask my GP to change my BP med to a different kind- said mine causes fatigue. So I do and she does- I'm still falling asleep in my chair from 7-9 PM. So he says I should get a sleep study done- must have sleep apnea. I told him I don't wake up choking for air- and my husband says I snore a little but everyone does. I told him I have noticed I can't be on my feet anymore- they start to kill me. he says I should get a good podiatrist and put orthotics in my shoes. i told him just shopping when I am done my whole body hurts anymore. He says well the older we get the less we can do before we notice it. I'm only 50! Before RA I felt and did things like a 25 year old!
So anyway he starts asking more about my fatigue- do you notice the day you take your MTX it happens? Well I say it happens always but yes the day of and day after seem especially worse. I also find myself searching for words, not being able to concentrate, etc. the day after.
SO- he says stop your MTX for 2 weeks and see if you notice a difference. No one flares after 2 weeks- well I say I did have my one and only flare when I went off for 3 weeks for a dental infection....
Maybe you don't need MTX at all he says. Your blood work has been so good and you have been doing so well (I have? Daily pain of 3-5 is doing very well?) maybe you are on it for no reason. i would hate to have you come in 3 years down the line with cirrhosis of the liver and you never had to be on this medicine. the only way is to try going off and see how you do.

To me this is ludicrous. When I went to him originally he said I presented with the worst case of RA he ever saw and he is old. Now he is saying maybe that wasn't RA at all. But everyday I have symmetrical pain in hands, wrists, ankles & feet- the classic RA areas. Yes it's bearable pain but it's not old age pain.

I am afraid if I go off the MTX I might do good for awhile and then WHAM! Taken out at the knees like what happened the first time. What do you think? Has anyone tried this before? I cannot afford to be down for the count again.
Posted 12/21/2010 5:00 AM (GMT 0)
Weary if it was me I would get a second opinion. Coming off your meds sounds very wierd to me, especially as you don't feel your symptoms are under control. Maybe you need to get the opinion of a younger more with it rheumy?

To me it sounds as if you need to add in another med not reduce mtx. The only time I went off it my knees became so swollen I could hardly walk. I wouldn't want to do it.

Get a referral to see a new rheumy, does your local doctor know of any others?

You don't want to flare over Christmas and New Year, so don't do anything until after the NY.

Goodluck with your decisions, best wishes, golitho

Posted 12/21/2010 10:51 AM (GMT 0)
I have to agree-a 2nd opinion makes much more sense to me than going off MTX. Maybe your doc is getting too old-you said he was old when you 1st saw him, and sometimes they start slipping up. I was off my MTX for 4 weeks (pneumonia) and had most notable pain increase in my hands & wrists (along w/other joints), to the point I had to start wearing hand braces again. Got to take MTX again this past Sat, thank goodness, and the pain in hands & wrists diminished rapidly- I've taken the braces off! I don't see your dr's logic that when you have fatigue every day already, and take MTX once a week, that the fatigue must be caused by the MTX?!? Makes no sense to me. He could pick anything at random that you take and say the exact same thing about it! I'm a firm believer in 2nd opinions! Just try not to do anything that would jeopardize your holidays-that would be a shame. But best of luck on that 2nd opinion doc! Just a thought-I always say a little prayer to be guided to the right doctor, or the doc who can recommend the right doc for me. Never hurts to ask ; ) Best of luck to you!
Posted 12/22/2010 1:58 AM (GMT 0)
sigh. It's hard to get an appt. quick with an RD here. There are only 4 in the area. One my GP said she would not even recommend that's what a bad rep he has plus I've heard it from other people. The person she originally referred me to was a woman who wouldn't give me the time of day or any pain meds in my most painful moments. This dr. turned my life around and was very caring and listened so well. But once I wasn't such a bad case I feel like he lost interest in me. He is old but he is a diplomat of Rheumataolgy. I'm not sure but I think that means that he still studies it and teaches it so that's why I feel like maybe he knows what he's talking about. I've never been a baby or a complainer but maybe I've turned in to one???? I can say I am easily led away from believing in myself.....that's a self esteem thing I guess.
Anyway I guess I'm not taking my MTX tomorrow. I have a terrible toothache in that same tooth I had the dental infection in that made me go off the last time. Is it a coincidence, a sign? I am so busy at work because my assistant took the week off so I am extra extra stressed. I can't take time off to visit a dentist because we are too short handed as it is. Advil didn't really help but I just put some ambesol on it and it took the pain right away. After a long day I have to come home and do my husband's office work for his business and I am at odds with our new accountant who doesn't seem to be looking after our best interests. I hired him because it's not my area of expertise and now I am finding myself making decisions about finances that I think he should be giving me guidance on. I emailed him asking for help and he told me to call him after the holidays! I have to so something quick before the end of the year is here and there is no longer any opportunity to save on taxes. Sigh.
Lady writer when you said going off MTX put you back in wrist braces that's exactly what it did to me too. I guess if I find that to be the case I will just take it real quick and probably have to go on prednisone for awhile as well. I hate that darn prednisone.
Thanks for listening- I feel really depressed. I've got some other things going on my life too.
Posted 12/22/2010 9:06 AM (GMT 0)
Weary,
Sounds like you don't have much to choose from when it comes to rheumotologists. How far is the next town/area where you could find more to choose from? I know it sounds drastic, but I'm kinda grasping at straws, really wanting to help you! I'm blessed to have one of the best RA docs in the country (as long as my COBRA benefits hold out...) and people actually come from out of state to see him! I've no idea where you're located, but we're in Colorado-Denver metro area.

You're not being a baby or a complainer. You have very real, clearly defined symptoms, and why your doctor is choosing to ignore them now is beyond me. Maybe he has a God complex and thinks he's already "cured" you, and when you bring up your continuing symptoms, it shakes his God-like image of himself. Who knows? Also, I've suffered and learned to deal with self-esteem issues most of my life, and doctors have the ability to make me doubt myself and what I know to be true from deep inside myself (in spite of all the self-esteem work I've done for myself).

Maybe if you wrote your current, continuing symptoms all out, clearly and concisely on a list (I'm a writer, so these are the kind of things I do) and shoved it in his face, well, maybe just politely showed it to him, he might see them all at once there in one place and it might "click" in his brain or something. I don't know-it's just a thought. Although, it might really help. It wouldn't hurt to try it.

If you typed your list up, had a little intro sentence or two explaining that you suffer the following symptoms daily (or however often), and follow that part with a complete, clearly defined, bulleted list of all your symptoms-well, this technique has worked well for me in a number of completely varied situations, although I've never had to try it with a doc. People usually respond to a well-written & formatted letter or list, and my experience is that doctors like lists from patients, and nearly everyone responds to professional-looking papers (even a single page) that are typed & formatted properly. I'm trying to think of things that might make your current doc take you more seriously, and this is all I can think of. I'd be happy to help you draft something up, if you like ; ) but no pressure, no worries. It's just a thought.

Also, you wrote that there were 4 RA doctors in your area, but it looked like you only spoke of 3 (the 1 you your GP wouldn't recommend, the 1 who wouldn't give you the time of day or pain relief meds, and the 1 you currently see) so what about that 4th one? Maybe you could make an appt w/that doc for a 2nd opinion?

Going off MTX temporarily, because of the dental infection makes sense. But doing it just to see if you can get along without it? I'd be scared to do that myself. Something in your health care needs to change, clearly. I wish I could be more help. I've lots on my plate now, too, and that makes it all the harder. My prayers are with you. If I can think of anything else that might help, I'll let you know. Right now, I wish you the best, and Happiest Holidays. At least forget about all this stuff for 1 day-give yourself a little break. With love, ladywriter (Lisa)
Posted 12/23/2010 3:30 AM (GMT 0)
Lady- how kind of you to give so much thought to my situation, offering good suggestions and even help in accomplishing them. Especially since you are so under the weather yourself these days. Thanks much- it means a lot to me!

You know when I think about it- when I first went to this doctor I had chronicled all that I had been through and he read it through and through asking questions and making notes as he read. Perhaps that is how my approach with him should be! He's just like anyone else- we all have our own way of processing information right?

I should keep a log starting now anyway to remember how I feel right now and see what changes occur. I get so busy and push so many things out of my mind if I don't write it down it gets lost.

Yes there is a 4th RD I know nothing about but perhaps I should make an appointment. I always feel funny about doctors being in cahoots with one another and maybe one will be offended.

Meanwhile my tooth got so bad I had to leave work an hr. early (boss got mad) and went to the dentist. I have an infection and was put on an antibiotic. He thinks it all stems from me clenching my teeth however. I'm so tense it has become a very bad habit I notice during the day but it is also going on at night. He said I irritated that tooth and moved it enough to cause a small pocket behind it that must have gotten a bacterial infection in. He wants me to wear a night guard- told him I'm not sure I could sleep with one and to try to train myself to notice I'm clenching and do something else when I am.

Glad I went because I woke up in the middle of the night with throbbing pain and knew I couldn't take the day off from work to go to the dentist and ambesol worked but if I had an infection It might get worse right on Christmas day and I would have to ruin my dentist's holiday along with mine.

Well tired now and I am going to bed.

Hope everyone is feeling as well as they can- given the fact we all have RA....
Posted 12/24/2010 3:49 AM (GMT 0)
I wanted to send some healing hugz to you and I hope your tooth
gets better soon...Good luck with this next RD doctor, fingers are
crossed and well wishes sent to you...Keep us posted..
(((((((((((((((((((((((((((((((((((Weary)))))))))))))))))))))))))))))))))))))
Healing hugz and wishes for a Happy Holiday Season...
Posted 12/24/2010 9:47 AM (GMT 0)
Dear Weary,

I'm headed to bed, but wanted to check in & see how you were doing. Glad you're on antibiotics for that bad tooth. They should help your mouth feel better over the Christmas weekend. I've had dental infections & had to take antibiotics, and they usually made a noticeable difference within 2-3 days (but that was in my pre-RA days). Get better bad tooth-that's an order!!! ; )

Seriously, I wish you a pain-free as possible, and enjoyable Christmas-time. Best Wishes!!!

ladywriter
Posted 12/24/2010 2:28 PM (GMT 0)
Thanks Char & lady! Hope you both have a beautiful pain free Christmas!

Tooth is not so bothersome but yikes! I have two young adult sons who live at home- one had a barfing virus 2 days ago now the other had it last night, husband is now lying on the couch with a cold rag on his head- he doesn't feel well. We have 16 people coming to celebrate tonight- my stomach is not feeling too great either but it may be the antibiotics....
Posted 12/24/2010 6:08 PM (GMT 0)
Weary....stay on your MTX..get a second opinion. I went off of my MTX a few times, and each time it only took a couple of weeks, three at most before I was flaring.
Posted 12/27/2010 12:15 AM (GMT 0)
Weary, i had a stage where my rheumy didn't seem to be listening to me. I went to my GP and told her my rant and she rang my rheumy and repeated what I'd just told her and that did the trick. My rheumy could hear my GP but not me!!!
I think they must go into overload sometimes but hearing from another medical professional was the answer or even get a letter from your personal doctor listing your symptoms?
I really hope your tooth improves, get back on the mtx asap. My rheumy doesn't stop it for minor infections at all, only life threatening ones. The only time shes stopped it was for pneumonia and even then only for 2 weeks.
Best best wishes and big hugs, golitho
Posted 12/27/2010 12:33 AM (GMT 0)
Go- it's just a coincidence that I got a dental infection at the same time "RD" wants to do an experiment about whether or not I really "need" MTX. He is doing this because I am complaining of fatigue and my blood test are all normal. No swelling- I just complain about pain every day 3-5 pain levels which he disregards as ....don't know ....old age at 50? Wed. it will be 2 weeks I've been off. So far no change.

I just lived thru a horrible stomach virus however...couldn't keep an ice chip down for 24 hrs. that sure took my mind off RA for awhile. :)
Posted 12/28/2010 8:09 AM (GMT 0)
I'm 50 too! I can't believe how good I feel now I'm back on humira with the mtx. I honestly wake without pain!!! I've managed 4 long walks without a flare, I feel really hopeful for the first time in so long that , dare I say it, I may have finally found a combination that works for me!
I'm not coming off my prednisone though, I will not tempt fate until I've had at least 6 months of this. Besides I'm on holidays so not working and can put my feet up when I need to.
My blood tests are normal even when I flare! They only go abnormal when I'm off my meds. My inflammatory factor went from 300 to 8 on humira!!!
I really hope you don't have a flare now you are off the mtx, at least you can have a Christmas drink!!! That must have cheered you up or have you been too sick? Poor thing stomach bugs should be banned at Xmas! How is your tooth?
You can have non swelling arthritis, I remember my rheumy telling me about it. I get a lot of swelling along my tendon sheaths, they are really hard to treat and seems to be the main problem I still have. Seemingly this is typical of seroneg people like me. I also seem prone to bursitis...such is the joy...the swelling in my joints is really good on this current cocktail.
I hope the outcome of this experiment doesn't mean more pain for you. Keep a pain diary for him, so he's aware of just what you can do. The pain surely is RA related, I know we could have some osteo creeping in at 50, surely he could confirm this with x-rays? or with an MRI?
I think you're far too young to have constant pain if you have no permanent damage to your joints?
Keep hassling him, you need answers, best wishes weary, golitho
Posted 12/29/2010 4:23 AM (GMT 0)
Hmm... weary they want to put you OFF the MTX and they want to put me ON... You are wondering if it is good for you? I am wondering if it is necessary for me... I don't know too... I want what is best for my RA, but Plaquenil + MTX + Prednisone + Humira ?? that is the mix... Most of the time I feel OK - little flares once in a while, but after steroid injections back to normal. And for some time some stiffness in my hips. I think Humira didn't start to work fully yet (almost 4 months).
I really like my rheumy, I would like to follow his directions...

Sorry I should probably post new topic... :)

Wish you best! best choices for yourself and sending positive vibrations ~ ~~~~~~~~~~~~~~~~~~

:)
Posted 12/30/2010 3:31 AM (GMT 0)
Well today is the 2nd dose of MTX I will not take. So far no additional pain but I do feel a little more stiffness. I am still recovering from the virulent stomach virus that I got Christmas Day. Couldn't keep even an ice chip down for 16 hrs. Stomach still isn't right...I have to say it's my experience that if my immune system has a "real" battle to fight my RA lays off. So not sure if that's why.

Tooth is more comfortable but had to go off the antibiotic because of the stomach thing...

I agree golitho- my pain is not from old age- 50 is NOT old! The normal blood tests are so frustrating. Glad you are doing well! Hope it keeps up and gets even better!

BStrong- I wouldn't fear the MTX. Most people benefit from it and most people do not get the awful side effects you are warned about. I'm a little surprised they didn't try it first. It's up to you about adding another drug. If you are at a comfort level you feel you can live with and your blood work and xrays aren't showing progression than why add another toxic drug. But if you are showing signs of progression- you need to add another drug to try and halt that. I wish you all the best.
Posted 1/3/2011 2:45 AM (GMT 0)
Weary, I've read your post but admittedly I haven't read the rest of them (there's a lot and it's late!)

Also, I'm not a RA veteran. But I can sympathise with you, many doctors don't seem to understand that when you live with these kinds of conditions, you know what is and isn't caused by them. For instance, I can tell whether I feel fatigued due to my Arthritis or due to Fibromyalgia, or due to just having done too much - and so I can act accordingly - I don't know how I know, I just do. My doctor however always seems to find something totally irrelevant to blame any given issue I have on, and if he can't, he tells me it's in my head. (I say "my" doctor, I have no intention of ever seeing that pretentious imbecile again, he also insists it's impossible to be allergic to dogs but not *****es, given I can't even be in the same room as a dog, but live with a *****... I digress, sorry)

Re the not needing MTX comment, it is quite infuriating when doctors treat the illness and not the patient. If one was to consider my blood work up alone, they'd mistakenly believe I was incredibly healthy. I also have daily pain in the region of 3-5, with daily peaks up to 6 or 7 for short time periods, but ho ho ho I have minimal inflammation and no deformation, therefore i'm _fine_ ....

I realise there is no advice to speak of here, but I'm sure the other lovely people on here have provided that. I just wanted to rant/share some empathy, as we haven't chatted in a while!

tc

James
Posted 1/3/2011 3:07 AM (GMT 0)
Oh Jay-

Thanks so much for your response and by the way- How the hell are you?

As I remember you were in quite a funk for much of the same reason I am today. Not being understood by our "God like" doctors. How are you faring?

Here I am 2 weeks and 4 days into my doctor's off MTX for his experiment.

I have not increased in incredible pain thus far but I do see increased stiffness and a little swelling although not to monster proportions as I did at onset. I do notice some deep joint pain now and again that does not progress and does not get increasingly worse and know that this has happened while on MTX as well. The fatigue- well it has not changed but lately I have been experiencing wakeful, anxious periods of the night so that can be the reason why...what do I report to this doctor. Surely he will dismiss it all. Hey- I would kick my heels up if I really did not have RA- but I don't believe that. I live in fear right now that being odd the MTX it will return with a vengeance and over night like it did me before.

I hope you are doing well. I hope you have found some kind of peace with your studies at college. I have always believed you have a great future.

Let me know how you are doing . Thanks again for thinking of me. I wish you all the best!!!!!

PS

I have really enjoyed the holidays- drinking as I like! :) The silver lining to the cloud!
Posted 1/3/2011 4:25 AM (GMT 0)
hah, the censorship filter ruined my last post, by b!tch I was of course referring to a female dog.

I'm glad to hear you enjoyed the holidays, I've been working for a lot of it, and job-hunting for the rest. Still, it's been good to spend time with family for a change. Had 2 job interviews (telephone as I'm exclusively looking for a career in mainland europe) in the last 2 weeks as well, and I'm currently waiting (hoping?) for a job offer in Germany - I don't like to count un-hatched chickens but I'm fairly optimistic based on feedback in the interviews.

College-wise my final ever exams start in 9 days, and I am yet to even open a text book (I also missed 90% of lectures, which is partially due to illness - but I can't honestly say entirely). I'm sure it'll be fine though, I just need to develop temporary savant-like abilities!

Med wise, I haven't taken Enbrel in over three weeks, and the only change is a slight stiffness/pain in the hands and knees. I've been avoiding it due to fear of chest infections due to a slightly cracked rib, due to ice/clumsiness, and I'm going to restart it at some point this week. Seems to me though that Enbrel might be over-kill given how little the arthritis is bothering me right now, but this could be simply because it's paling in comparison to the fibro-symptoms.

Oh actually I do have news, I _finally_ received an appointment to see a Pain Management doctor who isn't 400 miles away, after SIX months of waiting - and it's this thursday. Not really sure what's going to come of it, but I think I'll scream if I hear the phrase "Cognitive behavioural Therapy" or if I'm told to maintain a positive attitude. All I'm asking for is a script for Diazepam (or similar) and some sort of access route to a stronger-than-tramadol-or-codeine opiate pain med (i.e. Oxycontin*) for when my Fibromyalgia (or whatever the hell it is) flares.

*ideally Vicodin, as Tramadol is too weak, and I predict that Oxycodone is too strong, but hydrocodone just isn't available here...

I have an irksome feeling that I will leave the hospital more exasperated than when I entered, and if this is the case, then I am truly done with physicians.

Also tried a pain management hypnosis CD, but I'm not impressed. I'm sure hypnosis has the potential to help people, and I know from experience that I am "hypnotisable", but for some reason pain control doesn't seem to work in my case. Might be something you could consider though, I'd be happy to share the recording with you if you want to try it.

Weary, are there many other DMARDS that you haven't tried that could potentially provide better relief? What about the less-common or older treatments like anti-biotic therapy or gold injections? Just thinking aloud really as I know how long this has been going on for you now...

In some respects we're in the same boat here as my main complaint is pain which is not moderated by anti-inflammatory meds or DMARDS, so I know how frustrating it is in the search for a solution. I feel like a full description of how I feel/what I'm experiencing with this could easily fill several large volumes, and there's no way I can communicate all of this to a doctor in an appointment lasting a few minutes - I couldn't do it if I had all day.

take care,

jay
Posted 1/8/2011 4:13 PM (GMT 0)
Hi, I am new. I have had RA since I was 9 yo and am now 32. I had one remission aged 11-13. It is sooo important that you trust your rheumatologist completely. I found a good one when I was 19 after finally taking control and deciding that I would just rather not go at all to my current Rheumatologist. I didn't even like him. 10 years is a long time to not enjoy, trust, like the person that is responsible for your health care. In those years of not having proper care, a lot of damage was done to my joints because I didn't properly understand my treatment. Since I moved, I will fly 3000 km to have an appointment with my Rheumatologist now, because he knows me and is always talking of changes that may give the best possible outcome now and taking into consideration the future and the possiblities of future treatment. I feel I don't have to be on the look out for the medical side of my treatment because he has that covered. He always answers my questions fully and I trust he is looking out for me personally. I have had a lot of damage, both knees and hips replaced and wrist fusion but am now living life to the full, with 4year old twins and part time work. My meds include prednisolone, methotrexate, celebrex, enbrel, arava, endep (not long started). Managing my RA is my life, it controls every decision I make. But I get to make that decision, I am in control. When I loose control, ie getting enough rest time, I find it can set me back a long way, so i think it is important to really know what you need and then go get it. No second best.
Posted 1/9/2011 2:10 AM (GMT 0)
Jay- I responded to you on your other post

Jaff- yikes. Thank goodness I am not med resistant as it sounds like you are. I guess I should be glad what MTX does for me. You are right. If this RD does not make me feel like he is taking me seriously- I need a change. I know he's glad the MTX seems to have taken care of my problems but he makes me think he doesn't think I have RA anymore and having RA- I know I do. I need to feel validated.
Posted 1/18/2011 8:18 PM (GMT 0)
Weary - I just responded to your other post as well. I am new to this board. I truly hope you can see another doctor for a second opinion. Having no or fewer symptoms definitely doesn't mean that you don't have RA - it just means your treatment is working! I hope you are able to find a more attentive Rheumatologist. My other suggestion would be to get a referral to an Endocrinologist. I was battling a LOT of fatigue about a year ago and found out that I had a problem with my thyroid as well. They did a simple blood test to discover it and now I take a daily does of a drug called Synthroid to treat it (in addition to my RA meds) and my energy levels have skyrocketed. Apparently the thyroid condition I have, Hashimotos Thyroiditis, is another autoimmune condition just like RA, so it is not uncommon to have both. It would be worth checking out, as it can also cause additional joint pain, etc. Be well!!
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