Jen, what is with the apparent reluctance of Aus rheumies to prescribe the injectable form of mtx? Or is it just coincidence that we’ve “met” a couple of people from Oz who seem to have had this experience?
Thank you so much Jen!! All your information is very helpful and systematic. Originally it seemed as though the rheumy was trying the Mtx 3 times to either fail it due to lack of results or toxicity… But then on my last apt she went back on what she had originally planned and decided to take me off it all together without offer any other treament. She said because I was feeling so much better than when I first came to her and given my age and preg issues, she thought it was best to go without any treatment until my symptoms worsened again. I told her I thought I had improved because of the Mtx and she said she just wanted to wait and see. I then said I was worried about not doing any to slow the progress and letting things get worse and that my hope was to treat it aggressively in order to prevent joint damage. But I got nowhere, so I agreed to try without treatment for a while. I went to my GP a week later, in considerable pain since withdrawing from the Mtx and he was annoyed she was leaving me without treatment. He agreed Mtx may not be the best option for my situation but he didn’t offer an alternative. He said if I was absolutely sure I didn’t want children in the near future then he would recommend trying the Mtx again. He emphasized I MUST NOT FALL PREGNANT while on it and maybe I should consider having children now and starting the Mtx after babies. I got pissed off because I don’t even know if I want children at all, let alone now and I hated making that decision.anyway,
I decided to try the Mtx again due to the pain and stiffness I am currently having…
@Lousie
I am sorry and didn’t mean rude. However, I believe that a person physician should put the best interest of the patient first, not the cost to insurance/government. There are plenty of cheap and decent PsA medication to try, but if they don’t work, they should move to next in line treatment. Not have to try treatment that hasn’t worked over again. Waiting until it’s too late isn’t good foe the patients, and may translate into expensive treatments down the road.
Reading this again I am getting the impression your Rheumy was working the system on your behalf. Of course if you are working the system (manipulating) as it were you can't say that is what you are doing. If you do it becomes a conspiracy.
Did I read you waited a week before having the MTX restarted by your GP?
Two problems if that was the case. It takes a min of 2 weeks to detox from MTX before starting another DMARD. If you were having a severe reaction as you say, there is no way she would start SSZ until totally detoxed. The other issue is DMARDS don't function that way. What you were experiencing was either a disease flare or something that needed further work up. 5mg of MTX would not have provided relief.
You need to spend some quality time with a Rheumy. Something is wrong. MTX can not work as an analgesic. The only time a single dose will have any effect is when used to induce abortion. Even that takes a month or more.
PLEASE either return to your first rheumy or see anotherone very soon. Take a written outline of what has happened dose time date reaction etc. So they can figure out what is going on. I'm thinking there is going on than meets the eye. Keep track of everything rashes swelling etc./p>
no worries 
mataribot said:
@Lousie
I am sorry and didn’t mean rude. However, I believe that a person physician should put the best interest of the patient first, not the cost to insurance/government. There are plenty of cheap and decent PsA medication to try, but if they don’t work, they should move to next in line treatment. Not have to try treatment that hasn’t worked over again. Waiting until it’s too late isn’t good foe the patients, and may translate into expensive treatments down the road.
Whoa Lambie! When I was first diagnosed, I my then-rheumie started me on MTX. Didn’t do much for me. This was switched to injectable. Still nothing. Then, she added sulfasalazine and plaquenil to the mtx. Still no help. After that, I quit the ssz and p, and added leflunomide. No break in the mtx. Now, I know what you thought of my first rheumy. TG I switched to the docs I have now.
tntlamb said:
Did I read you waited a week before having the MTX restarted by your GP?
Two problems if that was the case. It takes a min of 2 weeks to detox from MTX before starting another DMARD. /p>
You missed my hints seenie?
OCCASIONALLY a doc will run two DMARDs at a time........ But the point is for the OP it takes two weeks to get the MTX out of your system . At the time she decided she needed to add it back she had an effective dose of 7.5 mg on board. Even if it was two weeks s
he still had 3.75mg on board........ MTX has a one week half life if 5mg is effective for her then a 15 mg dose would have lasted her almost a month. Yet she was in trouble in a week. Something else is wrong, or MTX isn't nearly as good as she thinks.............
Someting important to remeber about all meds is that it takes 4 times the dose frequecey to get to a sustainable half life.
LOL gotta love our Lamb!
The bottom line is Kellr got quick treatmentfrom her GP!following perfectly the text book protocol for MTX prescribing. She could have gotten THAT from a pharamacy tech. Her PsA or whatever is causing her pain/stiffness has been ignored. We pay docs to go beyond what the PDR says. We can get that on the internet.
I get so pissed when a doc substitutes bedside manner (making their patient feel like they are getting great care, when they are getting chit) for actual medical practice. I could explode.
This is my personal pet peeve as well. I like my dr. who is all about treatment, and he doesn't pull out the coddling bedside manner unless someone is having a sobbing breakdown in the room (I know a bunch of other patients who see my same rheumy. I personally find it a waste of both our times for me to cry in the office). I've heard of other docs who are all nice and comforting but don't do jack about aggressive treatment. Makes steam shoot out of my ears.
tntlamb said:
I get so pissed when a doc substitutes bedside manner (making their patient feel like they are getting great care, when they are getting chit) for actual medical practice. I could explode.
Lamb, I should have noted I got the relief from Mtx in my 6th week on 15mg I started to notice the swelling in my hand go Down And my morning stiffness improve. Then the rheumy took me off the Mtx for 2 weeks because of the severe reaction and then started me back on Mtx At 5mg for another 2 weeks and then I saw her and she ceased it again. The only relief I got was while I was on the 15mg, it actually took 4 weeks for me to be in pain again because I feel the 5mg doesn’t do anything…hope that makes sense - basically saying I had been off the therapeutic dose for 5 weeks by the time I saw my GP
That makes more sense. But the fact reamains you need much better treatment.......... You don't hand a kid a bottle of poisen and send them on their way. At 27 you have too much else t deal with than to have to have toxic medication management (and yes that is actually coded on your chsrt I would bet)
Yes, I do need to see a rheumy, just trying to decide if I go back to the same one or get referred to a new one
I was on NSAID's for 15 years, and nothing else in the 1980's and early 90's, and they DEFINITELY slowed down progression of the disease and reduced all the inflammation in my body. There is no doubt high dose NSAID's made a difference in my life, reduced deformity and long term damage. There are better meds now, but dismissing this method of treatment completely is wasteful.
mataribot said:
I don't agree with long term use os NSAIDs - they don't slow down progression of your disease and they come at a price. Use until your DMARD kicks in and tapper off.
A phone call to your old Rheumy should decide it........ How long till you get into another? Now that my rant is iver lets figure it out.
Kellr84 said:
Yes, I do need to see a rheumy, just trying to decide if I go back to the same one or get referred to a new one
I’m not sure how long to get in with someone else, anywhere from 3-6months would be my guess. I think I should call my current rheumy and see what she says. Thank you lamb
NSAIDs reduce inflammation and help with pain, but there is no clinical evidence that I can find that they slow disease progression.
It seems to me like you need to get to a rheumy asap to get off Mtx, as it's not a good fit for you, and onto something that's going to slow the progression of your PsA. I'd think it's worth a chat with your current rheumy, and if they aren't receptive, then find a new one.
I figured I'd throw my two sense in here-don't know if it's worth much. When I was 31 years old (I'm 41 now) I had a bad case of Lichen Planus which didn't respond to any topical or oral meds, including prednisone. I tried 17 meds that I had no response to. Since I had run out of options, the only thing left the derm could give me was MTX. He refused to give it to me, even though I already had a child, since I had not had a tubal ligation. Being desperate at this point, I told him I would sign anything to consent for the MTX and even considered having the TL. Anyone who has had Lichen Planus knows the itching will drive you insane, and at night you will end up scratching in your sleep until your bleeding. He still refused to give it to me. Ended up I just suffered with the Lichen Planus for another year and a half, and eventually I think it just ran it's course and went away.
Jump to age 37, guess who decided to have another baby :). At 31 I was adamant that I didn't want any more children. Oh how things can change. I was told by my GYNE that I would have to go through fertility treatments to have another child. I didn't have to. Had I taken the MTX back then, I always wonder if I would have been able to conceive my daughter.
I guess what I'm saying is, it's always great to have the option of having children. Even if you don't have children, at least that option was up to you and not due to the meds. I do take MTX now, but I have had a TL and endometrial ablation. Funny thing was, my GYNE wouldn't do the ablation without a TL. Seems like everyone wanted to sterilize me at one point or another ;)
As far as your rheumy goes, I had one that told me I was too young to have arthritis and shrugged me away telling me I needed to get my psoriasis under control (duh!!) and this was a highly recommended rheumy from one of our teaching hospitals in Chicago. Maybe I caught him on a bad day. Like every other profession, you have good ones and bad ones. Find a good one. I'm on my third and he's great. It took us a long time to find the right meds and dosages, but we're in a good place now. I don't know how it is out by you, but if your GP calls a rheumatologist, sometimes they can get you in quicker.
I'm sorry if I in any way came off preachy about the baby stuff. This was just my personal experience and I thought it might help you. Best of luck to you. Hope you're feeling better real soon!!