Yes, like Dani, it's been a year since my initial request to see a rheumatologist as well, and I'm still messing with DMARDs (mostly MTX) too. But, as my fellow Canadian says, that's publicly funded health care: it's a delicate balancing act between individual needs and freedoms, cost containment, and evidence-based clinical practice. The bottom line (or lines) for me are that I do choose the doctors I see, and in principle, only my doctor and I decide on what my treatment will be. Having to wait is one of the costs of our system, but, in the end, the only procedures that aren't covered are ones for which there is questionable clinical evidence. I have been wondering, since reading the research which brings into question the usefulness of MTX in PsA, how long it will be before this is reflected in what we Canucks are prescribed for this blasted condition.
In case Dani and I have made the waits in our publicly-funded system sound too scary: anything life-threatening gets attention pdq. Example: when they found a tumour in my Mother's head, she had an MRI immediately, and she had surgery by the top neurosurgeon in the city pronto. By contrast, for my foot, I waited 3 months for an MRI (and that was considered fast!). My TKR wait was almost a year because I had hand-picked my professor/surgeon and my hospital. But I don't have to worry about whether I will get care or whether I can afford it. Waiting, though, is frustrating and it can be painful. For that downside, of course, there's an upside: we pay for all this through our taxes, but every cost in our system is, essentially, at "wholesale" prices, with no middle-men markups or profit. It's all a tradeoff, and our system (though not perfect) works for most of the people, most of the time. And, like Dani says, the only thing you ever have to fork over is your health care card.
Hope you're having a better day today, Dani. But if not, like Gelita said, this a a good place to vent.
dani7865 said:
I would say not usually...I am just entering my 4th month on Methotrexate and am getting worse, not better. I just saw the Rheumatologist at the end of July and she says I need to try the MTX for 3 more months before moving on to the Biologics. This is all a political/insurance issues with regard to which insurance company pays for what (Alberta Health Care or Private Insurance). She needs to be able to justify the "tried 2 DMARDS and failed" protocol to the insurance companies here I guess is the way it works. In the meantime, I get to suffer. I just realized, that it has been over one year since I originally asked my family doctor for a referral to the Rheumatologist (July 2010), and I still am getting no relief....that is a sad state of affairs (although a big YAY for publicly funded healthcare...you might have to wait 6 months for a specialist, but you don't have to pay for anything!!!! Sorry, just having a bit of a bad day I think!!!
Thanks Seenie....you took the words out of my mouth. I am a fan of our system because it works (and sorry to get off topic everyone)...was just having a bad day!!!
I have to wait three more weeks until I can try Enbrel. I am on week nine of MTX. He is increasing the dose from three pills a week to six pills a week. He does not like to go above seven. I do not know what I am getting myself into but I am liking his plan so here I go.
Seenie, I may not be Canadian, but I have health insurance in America and it is the SAME ballgame. We all wait and we not always get the prompt care we need. We still are rowing in the same boat. Not only we share the likenesses of the disease, but also the circumstances that we are unable to control. I know, this upsets us, but it draws us closer.
I'm doing much better now that I'm on Enbrel. I still have pain in my hands, feet, hips, neck and shoulders but not as much.
Rebel mom said:
I have been educated to the max. Thanks everyone! What really amazing me though is that a lot of people can work. Me on the other hand can not move, barely walk, right shoulder is impinged, both hands and wrists do not work and I am stiff all over. I feel like I have accomplished something if I can get out of bed! Will it ever get any better.
I too have times when I can barely walk. Like today. It's my feet, hands, lower spine and knee. Are your feet really swollen? And hands too? A new symptom for me is that my feet are swelling very badly. I have had the pain for awhile and had therapy and a boot for my left foot but quite suddenly I find my feet are swollen to the point I can't wear shoes.
Gout goes with PsA. Go have blood work done and check your uric acid count. Mine got real swollen and it was gout. There is medicine for that and the swelling will come down.
Really? are you suggesting PsA causes uric acid levels to rise? I mean I know Gout is a form of arthritis, but I believe Gout is related to metabolism rather then immune system?
in my case, Gout has always flared when I wasn't careful with my diet, alcohol and weight..
Rebel mom said:
Gout goes with PsA. Go have blood work done and check your uric acid count. Mine got real swollen and it was gout. There is medicine for that and the swelling will come down.
are there any studies or documentation that you can point me to that explains the relationship between gout and PsA? not doubting your experiences, but I have suffered from both as well, and was always under the impression that Gout was related to metabolism
are there any studies or documentation that you can point me to that explains the relationship between gout and PsA? not doubting your experiences, but I have suffered from both as well, and was always under the impression that Gout was related to metabolism
Mtx has been great for my psoriasis, a miracle drug, if you will. I did lose a lot of hair at first, but then it grew in wavy. I looked like I had a spiral perm without the cost. I probably started getting Psa a yr and a half ago, and I've been on mtx for nearly 7 years. I hope to start Enbrel next month. I'm 42, so I'm a little nervous about what someone else typed regarding being 40 and therefore Enbrel not being a good idea.
Roe said:
Hi, I have psa and fibro and have lived for last two years drug free but cant do that anymore. I just started taking the mtx last night for the first time and after reading all of these posts I'm even more worried because I have a crappy rhumey. She didnt mention anything but mtx. Seemed to be a big fan of it actually.
I decided to take it anyway just in case it wil work for me, and because of what you all said about insurance companies needing it taken first before paying for other things. Only problem is, the only insurance I have is medicare and I doubt they pay for much and I'm pretty poor. Anyway, so far, I've had a slight upset stomach off and on, but have kept food down. How long until I can expect to see results or side effects if they happen?
How do you get your doctor to provide more than mtx, and has anyone brought up those articles about mtx not really working on psa to your doc and what was their answer? I dont think this derails this thread much, if so, I'm sorry. Wasnt sure where else to ask. Thanks!
Instead od Methotrexate, they started me on sulphasalazine.
Roe said:
Hi, I have psa and fibro and have lived for last two years drug free but cant do that anymore. I just started taking the mtx last night for the first time and after reading all of these posts I'm even more worried because I have a crappy rhumey. She didnt mention anything but mtx. Seemed to be a big fan of it actually.
I decided to take it anyway just in case it wil work for me, and because of what you all said about insurance companies needing it taken first before paying for other things. Only problem is, the only insurance I have is medicare and I doubt they pay for much and I'm pretty poor. Anyway, so far, I've had a slight upset stomach off and on, but have kept food down. How long until I can expect to see results or side effects if they happen?
How do you get your doctor to provide more than mtx, and has anyone brought up those articles about mtx not really working on psa to your doc and what was their answer? I dont think this derails this thread much, if so, I'm sorry. Wasnt sure where else to ask. Thanks!
I'm so glad to see that it's not just me! I was okay with trying it out, and seeing if it works. But I started taking it in March, and while my dr seems to think that I have less swelling, I now have new joints that are painful, and have gotten weaker. Not only that, but I still have nausea from it. She added it in on top of plaquenil, but I haven't seen any change. I'll be going back in a month, and will ask about stopping or changing. . . 6 months is a long enough trial.
I have been taking it since April and still get side effects for two day after I take it. It does seen that 6 months is a long time. Hang in there and let us know what happens.
Hello again- just read through all of the comments on here re. methotrexate. it is interesting that apart from its positive effects on psoriasis , there appears little positive said about its felt effects on well being with those suffering from the wider symptom spectrum of Psa. Im curious about this - but not surprised. In the UK which has a National Health Service , we have a regulatory body called NICE - national Institute for Health and Clinical Evidence-. This is a way of putting a positive spin on the fact that all health resources have to be carefully regulated, and expensive drugs and services rationed. I am not disagreeing with this principle - the NHS is a wonderful organisation and for any emergency treatment is amazing. But, there are strict protocols about who gets the expensive drugs for chronic diseases. So I believe that the rheumatologists have several hoops to jump through before they can prescribe biologics to patients. I think they have to provide evidence that 3 DMARDS - sulphasalazine, methotrexate, chloroquine, et al haven't worked before they can give the patient a chance at Anti - tnf drugs- etanercept,infliximab,adalimumab. The biologics cost a lot to administer, and I expect they have some tough clinical decisions regarding patients with other issues too.
I am particularly thinking of younger people who have yet to start their families- it is a long time to wait if you are suffering - to go through 3 DMARDS to get to biologics. For myself I am glad I had my two pregnancies when I was at the early stage of this disease- when I was 28 and 29. i came of Methotrexate and indomethacin for 6 months before I got pregnant. Later when I thought i might be able to have another baby, after using prednisolone, I found I had very severe endometriosis - probably caused by the use of steroid for several years. I never got pregnant again, and had a total hysterectomy when I was forty as the risk of endometrial cancer and the huge ovarian cyst I had meant it was the only safe option.
Think carefully about using these drugs if you want to start a family and discuss these things with your doctors before it is too late. Check out methotrexate and its effects on your fertility, as well as its more obvious side effects x
Methrotrexate did contain my psoriatic arthritis for about five years. I had no further deterioration during that time. Now my joints are getting worse and I'm about to be prescribed Humira while continuing with the methotrexate. Has anyone had experience with this?
My Rheumy keeps me on mtx while changing biologics. She says mtx help the biologics work in stubborn cases like mine. So far, six years, none of them have offered much relief. I probably had PsA for 30-40 years before it was diagnosed.
Michelle- I missed the mention of Enbrel being a bad idea after 40. I am 55 and wondering why. Also my hair also fell out on mtx then ended up curly. I really like my hair curly! I have never heard anyone mention that before. I also have lost weight on mtx. I don't feel like eating a lot and seems things taste different.
My docs took me off Mtx years ago. What is steady is the Pred-5mg. The rest of my meds come and go, but the Pred remains. My inflammation never concedes.