My GP over-ruled my rheumy! Anyone else had this happen?

Ok, so I had been started on Mtx at 10mg once per week and 10mg folic acid weekly two days after the Mtx - by my rheumy on my second apt. I was already on naproxen sodium 550mg, twice daily with pariet 40mg and 200mg tramadol daily. At this dose I had extreme fatigue and a couple of bouts of nausea but no vomitting. The rheumy said i could take stemitil for the nausea. After two doses the rheumy increased me to 15mg, which on the second dose resulted in severe vomiting and fatigue and I needed injections of stemitil to stop the vomitting. The postive was that at 15mg my joint pain decreased significantly!! The rheumy then took me off the Mtx completely for 2 weeks and Once I came good again put me back on only 5mg this time. After 2 doses at 5mg I had my rheumy apt. She said she was afraid if she increased the Mtx again I would get sick and that 5mg wasn’t therapeutic and given that I’m only 29 and never had children and have had 2 surgeries for endometriosis she wanted to take me off the Mtx until my symptoms were severe again and preferably after having children. After only 1 week without the Mtx my symptoms came back with a vengance! My GP said if it was this bad despite the naproxen and tramadol that I should be on the Mtx, and as long as I wasn’t wanting to fall pregnant in the next 6 months this was fine. I told him (as I told the rheumy) that I don’t want babies anytime within the next 2 years at least and maybe even never. I also have a mirena in so an accidental pregnancy was unlikely. I am now back on 5mg Mtx weekly, taking folic acid every day but Mtx day as per my GP. He also did a blood test today to monitor my bloods more closely than monthly. He also said to take 4 doses of the 5mg and then increase to 10mg. He is also hoping after a few months on mtx, once i start to get adequate relief he would like to ween me off the naproxen and tramadol. The argument being the naproxen only reduces the inflammation but can cause GI ulcers, but the mtx is a disease modifying drug. I feel like I am in control again and have more faith in my GP than my rheumy!! Has anyone had a similar experience and should I ask to be referred to a new rheumy as well?? Would love to hear your experiences and opinion on my GPs plan for treatment. Thanks :slight_smile: Kelly xox

Just wondering, Kelly: are you taking mtx pills or are you injecting?

Seenie, pills, I asked about the injections but they don’t seem to offer it as much here in oz, must be more expensive or something? GP said to try this one last time on the pills…

Kelly, what are you thinking you should do? I have some thoughts … tell me your idea first! LOL

Given your severe reaction to MTX and history of endo, its pretty easy to see WHY the rheumy discontinued it. There are other factors at play. Endo is often an autoimmune disease, aggravates such things as Lupus and good ol' osteo. All of these things of course come at very high rates with PsA anyway why tempt fate??????

Yes taking folic acid supplements mitigates some of the effects from the depletion of by MTX But the effects on folate stores because its an antagonist and production are not reversed (thats why MTX still works. It is of course also a folate antagonist that often causes the Endo to begin with.

Heres the thing for you taking MTX could render you sterile. maybe not a problem in your thinking today but could in the future. In any event in the US anyway (don't know about Oz) basic ethics does not allow treatment with that effect at least to someone who has not had children in your case it appears to be a judgemnt call

Also taking MTX increases the probability (already higher than norm) of Lupus, osteo and additional endo. All of which are at least as bad as the PsA or in the case of Lupus fatal.

The thing is there are bajillions of options that won't do any of those things. Were none of them offered by the Rheumy? Are they unknown to your GP? Aside from any drama going on (its always cool when a doctor over rules another) you are getting very poor treatment at this point. Or are you hung up on MTX?

As always, Lamb has some wise input. I agree whole heartedly with him on this. It’s nice when a doc takes control, but not if he could be wrong.

The fertility issue is a big deal. I had endometriosis, and after I had my children my doc allowed an endometrial ablation and then a hysterectomy even though I was in my early 30s. But, I had been asking for those treatments since 28 years old. He refused until he was pretty certain that I wouldn’t change my mind and end up living with a ton of regret. It’s a frustrating situation for you, but try to understand where the doc is coming from.

I understand that you are getting some relief (finally) and its hard to give that up, but there are other drugs that would be better than the MTX for a woman your age. Plus, you may even find that they work better. I suggest talking to your rheum about other med treatment, because you DO need to be on something that will control the disease. If she won’t yield, it’s time to find a new rheum.

I've never heard of this before. From my experience, my GP knows very little about PsA. I really hope you find the right path for your sake. I had to go off of Mtx due to many, many side effects.

My GP has a lot better knowledge of PsA than most gps do, but I agree a rheumy would be better at handling this, that is a good rheumy. I was pissed off with my rheumy after my last apt with her because I was in with her for 10mins max, and all she did was take me off the Mtx and leave me on the naproxen and tell me try to cut down on my tramadol slowly. She said if I got worse again with my symptoms to come and see her sooner than my apt in November and she could either start up the Mtx again or try me on sulp… Something (can’t remember the name) - its in the same sort of class as the Mtx. I have never been offered anything else to try. I was so annoyed I paid $100 to spend 10mins with her - she didn’t test my joints at all and has left me hanging. I’m not hung up on being on Mtx, I just want to be treated!! And I’m willing to try anything. So, naturally, when my GP took control and spent much longer with me discussing things, I went with him. I do want him to refer me to another roomy anyway but I have lost faith in my current rheumy now…

I am going to have to agree with the others; MTX is not the best choice for you given your age and medical history. There are many other drugs out there to try. If biologics are an option, I would pursue that next.

sulfazine (ssz) she said to call, kellsr, so call and get started. If I recall withe medicare in OZ you have to have two DMARD failures to get a bio..... SSZ is a pretty good drug with a lot less side effects...........

Well, Kelly, I’ve never known a GP to question, let alone countermand, a specialist’s advice. Your GP obviously believes, I think correctly, that you need treatment. That’s a good thing in a way but I’m surprised that he made those recommendations. But the bottom line is that you haven’t done well on the higher (therapeutic) doses of MTX, and there are some good reasons for you not to take it at all. I agree with Lamb, the SSZ plan makes a lot of sense, and I believe it is sless likely to cause you misery. If it will help you is another question.

If I were you, I’d be asking your GP for a referral to anotther rheumy. It really doesn’t sound like your current rheumatologist has a coherent plan that will keep you moving and working. I’m guessing that your GP will be only too happy to oblige.

The nausea is MUCH milder with the injection as opposed to the pill. And mtx is low priced. I take a 20mg injection every week. I also take Sulphasalazine 500 mg twice a day, folic acid 2 mg per day, sulindac (nsaid), and tramadol, not to mention other medications for bp, thyroid, depression, anxiety.

Yes, the injections are often much better tolerated than the pills, and I’ve also read or heard that the mtx is more effective when administered this way. But Kelly isn’t the first Australian to mention that the injectable form isn’t used much down under. I have a vague recollection of another member saying that the doc wouldn’t give him injectable because there was no way of disposing of the waste (not the needles themselves, but the residual/left over mtx). I find this odd, as I thought that pharmacies have a disposal system for medications. Maybe someone else in Oz knows a bit more about this. ??

Yes I guess the only way to know is to ask. I am wondering if I should give my rheumy the benefit of the doubt and give her a call to discuss what next… Maybe I should give her a second chance b4 going to someone else. I just don’t want to be left hanging again… I will have a think about it. I just don’t want to upset my GP either because he has been good to me, has actually listened and is the first GP I have come across who has a good understanding of PsA.

Hi, yep, I’ve not often heard of a GP over ruling a specialist but I can see they both have a point but unfortunately you are ending up as piggy in the middle. Leaving aside the MTX issue most of us here are on an anti inflammatory medication, which is pretty standard for PsA patients along side a DMARD. I personally was on naproxen,but was changed on to meloxicam because of GI issues. You should also be prescribed a med to protect your GI if on and anti inflammatory medication (such as omeprazole) and some even come in a combo of the two meds. General inflammation in the body is an issue with PsA sufferers so being on a med which can help to dampen down inflammation generally is important.
I’ve been changed from tabs MTX to subcut injections because of severe nausea and have just mild nausea now so the injectable MTX is much better for me. It has to be disposed of in a purple sharps bin in the UK and these are exchanged when full at the pharmacy, then disposed from there.
I too have a mirena fitted because of endo and found it to be a fantastic help, my Hb levels were always low because of heavy bleeding and on a med which can deplete Hb levels further was a concern. Hb levels are now the best they’ve been for many years despite MTX.
Good luck with it all

Hi Louise, thanks for the info :slight_smile: glad to hear ur mirena is working for you, I love mine too, it’s great!

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.

I honestly don’t care for any doctor who neglects to treat their patients because of paperwork and cost of treatment. Let’s make someone suffer and risk permanent damage all in the name of being the being a brown noser.

Very true

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.

I honestly don’t care for any doctor who neglects to treat their patients because of paperwork and cost of treatment. Let’s make someone suffer and risk permanent damage all in the name of being the being a brown noser.

Unfortunately not all people get adequate relief from the DMARD they are on, and unchecked inflammation throughout the body does need to be addressed in some way. I for one would not be able work and support myself if I wasn't on an anti-inflammatory. The other thing to keep in mind is that not all people are in a position to be on the best available medication for PsA. 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.

I honestly don't care for any doctor who neglects to treat their patients because of paperwork and cost of treatment. Let's make someone suffer and risk permanent damage all in the name of being the being a brown noser.

Hi Kell, not sure how long it will take you to get into another rheumy, but it may be worth considering that before you decide not to see your current one again.

I understand the reluctance for MTX in your case. But it’s also worth knowing that the only way to the biologics in aus is through the MTX. You can either take it for 3 months (minimum 20mg dose), or you need to fail it due to toxicity. It’s possible your gp knows this and is just trying to get this part done. So the real question for the rheumy, is if she doesn’t want you to take it, will she declare you “failed” for the purposes of the biologics form, and give you something else to try?

Having said that, I believe both sulphazalasine and plaquenil might be options that you could try - if they work, then there’s no need to be concerned about MTX for now - you’ll have to cross that bridge when you come to it. MTX isn’t a good option at your age, like a number of the others have said, however here in Aus, that doesn’t seem to bother the rhuemys too much. Mine wouldn’t give me MTX unless I said I wasn’t having kids - but like yours, didn’t offer an alternative. Luckily I’ve had my one, with no plans for more, so I jumped through the MTX hoops (didn’t help much) and landed at the biologics.