Hello everyone,
I’m hoping some of you can give me some advice. My doctor has put in three referrals for me so far. The first wasn’t taking any new patient due to a long wait, the second had a two year wait, and we are waiting to hear back from the third. The referral was put in on august 20th and still haven’t heard anything back. She faxed the rheumy’s office some more info and that my pain was escalating about a week and a half ago.
I’m getting more and more impatient. I’ve only had significant pain since last November. It started in my SI joints. When I had an X-ray early last year it showed that I already have damage to my SI joints and between L5/S1. Within about 6 months I’ve gone from only having pain in my lower back to my feet ankles, hands fingers, knees. I’m really worried that these other joints are going to be damaged too.
Can anyone give me advice to what my next step should be? Right now I’m on naproxen or ibuprofen and t3s for pain. I’m also so tired.
Sorry I meant that I had an X-ray early this year
Hi Meg, to put not too fine a point on it, hell yes! You need to get treated as fast as you can - I’d be prepared to fly to another city to see a rhuemy if that’s what it took, because treatment not only makes such a big difference to quality of life, but you need to get that damage stopped or slowed.
I’m sure others will chime in with more practical info for you (I’m in aus so don’t know much about systems in your part of the world), but definitely, you need faster treatment than what’s going on now.
Yes Meg,
I agree with Jen.. you need to be looked at ASAP.... I got diagnosed last October.. and probably had already had the condition for over 10 years.... I was so naive... so please see one asap... Mj joints have been damaged and there is no going back...so I have to live with the pain for the rest of my life... YOU DONT!!!
Find one even if you have to drive 2-3 hours... it will be worth it...
Gentle Huggs
Let us know how things come out....
Karen
Hi, you definitely need to see a rheumy and fast. I would call the doctor that referred you to these docs and see if you can get things going. Or call this 3rd doc and ask them if there is a waiting list. If there is, go back to the doc that made the referrals. There has to be another rheumy that is available much sooner.
My first rheumy didn't help me, I had to go back to my GP and get a new referral. You need some proper medication for the PsA.
Meg, push it and push it hard. An idea, have you tried calling your insurance company ? I work for Case Management in an insurance company attached to a hospital and our Case Managers are very helpful trying to sort out prescriptions, getting information, appointments, giving advice (all of them are RN's) ...Try calling and asking for a Case Manager. Don't play the Waiting Game, you cannot afford it with this disease :(
Namaste, Isabella
I would call around, find out who is taking new patients and your insurance, even if the rheumy is far away, and then get your dr. to write you for that specific dr. You have to be proactive and not wait for referrals to pan out on their own. Call the dr. and the rheumy every day to make sure the referral goes through (shouldn't take more than a day or two), then make an appt.
It took a year for me to get into a rhumy. And the referral was high priority. I would call to see if you can go on a cancellation list sometimes that gets you in faster. In the mean time take your naproxen twice daily. Ats atleast something.
West Coast Meg, you, me and your GP all know that you need to see a rheumatologist asap, and you’ve hit the waiting list delay. It’s an ugly side of a very overburdened system where everybody gets good quality care eventually. Unfortunately, eventually may cost you damage. (In case someone missed it, Meg is Canadian, and she has government-run health care. It works pretty well for most people most of the time.) A delay like this would not happen in cardiology or oncology! It seems like in all provinces there is a serious shortage of rheumatologists. Most rheumatology problems are slow moving, but that’s not always the case with PsA. Damage can happen quickly.
When erosions were discovered in my feet, I knew I needed quick treatment, and I faced a 9 to 10 month wait to get into a rheumatologist as well. My GP flagged my referral as “urgent”. Repeated calls to the office where I had been referred was simply hopeless. (“Oh,” laughed the secretary, "Every referral that comes through here is marked “urgent”. Nice!) I was so distressed about this that I got myself a consult in the US. I paid out of pocket for that, but did get a PsA diagnosis from the American rheumie. I had also considered finding a private clinic in another province (as there are none in Ontario). I believe there are some private clinics in Vancouver, BC. That might be a way of speeding things up for you.
After I returned from the US with a diagnosis, I asked my GP to prescribe methotrexate for me, as I knew that would be the first drug a rheumatologist would put me on. She refused, as it is a drug outside her “repertoire”. When I begged, she went out on a limb and prescribed me a very low dose. Better than nothing, I figured.
In the end, I played the small town card and spoke to someone at the hospital who I knew socially and he pulled some strings with his personal rheumatologist. I was seen the next day.
There was another move I thought I might have to make: I went looking for a rheumatologist with Canadian registration working in the US. I found several. Any doc with a Canadian professional registration, no matter where they actually work, will be able to give you prescriptions that you can fill in Canada. Message me if you want to know how I found these rare doctor birds.
Unfortunately, moving outside the provincial health insurance system will cost you out of pocket. It’s not fair, but you may have to consider doing that if you are afraid that the long wait may cost you damage.
I know what you’re up against, Meg. Been there. You really do need to advocate for yourself.
As Seenie has been in the same boat and learnt how to paddle through the Canadian health system (by stealth, wile, and determination) I would go with what she advocates…you do need to see someone now
Good luck!
Louise, my family and I have had generally good (and some extremely positive) experiences in our publicly-funded system. (I have to say, there were times when I’d shake my head in amazement at the wonderful access and treatment we received from “socialized medicine”.) But access to specialists for what is perceived as being non-urgent (eg rheumatology, dermatology) is nothing short of DISMAL. It will take 9 months to see a dermie to confirm that you have psoriasis. But if your GP thinks you may have skin cancer, you’ll see the same dermatologist within a week. It makes me really angry that we sometimes have to resort to stealth, wile and determination to get the timely treatment that we need. The stealthy, wiley, determined patients should not have an advantage over those who don’t have those “skills”, but it is a sad fact of life.
The sad fact is its not just "socialized medicine" wait time to a rheumy in my area is a year. Its not much better around the country. I got in very quickly because threatened to expose my rheumy's past as a dope smoking arsonist For every five retiring, only two are accepting fellowships. In this country the hospitals don't want them because they produce less income than a nurse practitioner. They are paid less than a pediatrician. Frankly they can't service their medical school debt. So what we have is private practices generally often without hospital privileges for both rheumies and dermatologists. They may accept some insurances but will not accept either medicare or Medicaid as the reimbursements are simply too low. The are several such practices in Vancouver. They are huge and interestingly in a strange quirk of fate people are crossing to the Canadian side to get service from the Seattle area.
You normally only see a Rheumy a couple of times a year and there is rarely any tests or imaging needed to be done. My blood work etc is managed by my PCP. I spend less than $400.00/year on my rheumy. I realize if you you don't have $400.00, that's a lot of money, but just there is always a way to get it.............. (2 plasma donations if nothing else - works well actually cause I also get a free blood count)
I’m glad you have an overall good experience of your health system, despite my recent grumpiness over the postponed move to biological med, I’m proud of the NHS despite the “kick the NHS” attitude often instigated by the media in this country. On Saturday I was asked by a new patient with numerous co-morbidities who has been through many different departments, why are we all so lovely in Renal…it was lovely to hear 
Seenie said:
Louise, my family and I have had generally good (and some extremely positive) experiences in our publicly-funded system. (I have to say, there were times when I’d shake my head in amazement at the wonderful access and treatment we received from “socialized medicine”.) But access to specialists for what is perceived as being non-urgent (eg rheumatology, dermatology) is nothing short of DISMAL. It will take 9 months to see a dermie to confirm that you have psoriasis. But if your GP thinks you may have skin cancer, you’ll see the same dermatologist within a week. It makes me really angry that we sometimes have to resort to stealth, wile and determination to get the timely treatment that we need. The stealthy, wiley, determined patients should not have an advantage over those who don’t have those “skills”, but it is a sad fact of life.
Thank you everyone for your input, I really appreciate it. My husband and I are looking into a few options. I called the rheumatologists office and they said I was prob get in late November or early December. We’ve been looking at options on going the private route. It’s a tough decision because I really do believe in our health care but no one should have to suffer for this long.
Meg, I believe in our system too, but no system is perfect. At the moment, wait times for rheumatology are too long, and somebody’s going to get hurt. I don’t want it to be you. If it looks like you may get in to see the rheumie before the end of the year (fingers crossed) perhaps you’d only need to see the private doc once. Doing that may speed up the decision making process for your treatment plan.
Getting a consultation asap may help prevent damage, and get you back to feeling better several months sooner than you would otherwise.
I know, it’s a hard decision, and it goes against my belief in our system too … but you need to protect yourself when the system isn’t working as it should for you.