Re Medication vs Natural

[Damaged]

Hi, I am Canadian and find the policies regarding treatment varies quite dramatically. Here, even if you have a drug plan medical services (MSP) determines when a Rheumy can prescribe Biologics. I have seropositive and very severe RD, My CCP antibodies are at 300. I was diagnosed in July 2015. I have been seeing Rheumatalogist, Neurologist, Opthomolagist etc ...and endless tests still in progress. Autoimmune diseases are very complex and overlap, many of us have multiple conditions concurrently. My Rheumy is American. I am 55 yrs old and she is without question the most companionate caring Doctor I have ever met. My wish for each and everyone of you is to find someone you trust and please follow recommendations regarding treatment. These conditions can affect your entire system. Not only joints. I think there is no reason to not try any natural remedy if it helps but do not stop treatment without first examining the possible. On sequences.

[nomoreheels]

What commonsense you write! I wish you well, it must be so difficult dealing with multiple autoimmune diseases, some here do but to date (I hope) I just have the one, seropositive RD, it's enough for me to deal with!

I did have excellent care but circumstances meant I had to move back to the UK, my Rheumy I believe (because I've not seen her since early last year) has returned from extended leave. That said I have a Rheumy appointment next month with yet another Rheumy. I must stop being accepting of the care I'm receiving, start being proactive & broach the subject with my GP.

I hope you enjoy being here, it's helpful learning how people in different countries receive care.

[Damaged]

It is a very complex disease. I think doctors and specialists have a tremendous burden in treating autoimmune diseases because it expresses itself differently to each individual. Being an invisible disease also presents many problems. Everyone has a remedy. The truth is , there is no cure...only treatment. But the treatment, frightening as it maybe, can prevent significant damage to your joints. Only a few short years ago there were no reasonable options available. What my father calls a G&B (GRIN and BEAR It situation. My heart breaks for all the young people coping with this. It is not easy for anyone. Life as you know it has changed. Time for a reboot lol I have several friends in UK. I have been seeing my Rheumy every four weeks, and often in between. She gave me her personal email and regularly calls me at home to check on me. On my last visit she hugged me... I lost 65pds and now weigh 103pds. I think it brings out the protective nature in my health care team. The challenge for me is family and friends. I went from running tree businesses to a dead stop. I thankfully sold my shop effective the 15th and my son is taking over my financial planning business. But from that life to total isolation is very difficult. I spend all of my time researching. This site is the only one I have continued to monitor. The best information is from those who live it. The strength of the women and men in this group is inspiring. Thank you all for your support.

[Mall]

Here in the UK we have very strict rules, and checks and hoops to go through before being prescribed biologics; it takes time and some rationing is involved but at least folk with the most severe disease who haven't responded well to other DMARDs get them. It seems in the US if you have good medical insurance you are prescribed biologics straight away but if you haven't then you are shown the door. I prefer the good old NHS and wouldn't want to see insurance corporations with their medical plans determining my treatment.

Natural therapies have a place but due to the severity of some rheumatoid diseases drug therapy is the first consideration for treatment in my view. Holding off drug treatment can lead to serious complications and exacerbate the condition and lead to future disability.

[angel-delight]

Hi Damaged,

Can I ask where in Canada do you live? I chat with several on this site but no one in Ontario. I have relocated to Toronto from the UK late last year. I need to find a Rheumatologist and a good one and it seems that you have a very understanding specialist.

I haven't been able to get a gp as yet as I need to be here for 3 months, I am almost there and applying for my health card.

I have no complaints regarding the NHS my treatment in the UK has been excellent but I have family here in Canada and now that I am retired and feel the cold damp weather in the UK isn't helping my RA I prefer to be in Canada with my family.

I haven't arranged for any medical insurance as yet, it is something I am considering due to the fact I was on biologics in the UK and from what I understands from friends here in Canada medications are very expensive.

This website is excellent very kind understanding and informative people who are willing to give you the support you need. You never feel like you are alone, always someone here who will listen when you are having a bad day and we all have them.

The NRAS is also excellent when you need advise, you are right we are all different and we all respond differently to the various medications.

I wish you well, I enjoyed reading your blog.

Take care, S

[Fcrooks in reply to angel-delight]

I'm responding to your request on recommendations for RA Doctor. I live just east of Toronto and my doctor is in Oshawa Dr. Larisa Lisnevskaia and I really like her. If I wasn't happy with her I would have definitely looked to Dr Edward Keystone in Toronto. You can look him up and read his reviews. I had someone highly recommend him to me and he treats friends of my mom. Hope this helps.

[Angels-delight in reply to Fcrooks]

Hi Fcrooks,

Thank you for your quick response, very much appreciated, I am living with my son and his family in Pickering and I have a friend in Whitby who is driving me around as I have to renew my licence along with many other things. They say moving house is one of the most stressful things but moving country to another country is even more stressful.

I do appreciate your help and I will look into both doctors. I use to go to the Rothbart pain clinic when I lived here before but that was when I had migraine headaches due to trapped nerves in my neck. I saw a Dr Anderson he was excellent.

Take care, S

[Fcrooks in reply to Angels-delight]

Sounds like you are from Ontario and have moved back from the UK. If so, that's helpful as your accustomed to our winters which we have been very lucky this year with minimal snow and not nearly as cold as last year. Interesting enough I'm attending a program through 'The Arthritis Program (TAP)' next week in Newmarket. The TAP team consists of rheumatologists, occupational therapist, physical therapists, pharmacists and the program runs for 4 days and they have all the experts there accessing your progress etc. It's an info session for people living with inflammatory arthritis. I was diagnosed approx. 2 years ago as my RF factor was positive. My very best friend has been struggling for over 2 years with similar systems as myself however, they didn't diagnose her until the last couple of months and she has experienced a lot of pain etc. as a result of no diagnosis. I'm going to this session with her for support. I believe I've got my RA into remission and I am on MTX & HDQ (plaquenil). I can share any information with you after I attend my last session which will be March 24th, if your interested and if there are future sessions I can let you know if you would like to attend....maybe they'll have one in Durham area.

Take care of yourself in the meantime, Faye

[angel-delight in reply to Fcrooks]

Hi Fcrooks,

Thank you, I would appreciate hearing from you after your last visit in March. I to have inflammatory RA and would be very interested in what they have to say. Yes I am from Ontario, I am very familiar with the Canadian weather. Most of my friends posted online regarding the winter last year and so much snow.

We don't have much snow in UK but we do have a lot of rain and it is very damp which has effected my RA. I was on Tocilzumab infusion in the UK last year, the first 2 were great no side effects and they worked really well, but the last 2 I had bad side effects whilst having the infusions, throbbing pain up my spine and my BP shot up to over 220 whilst my BS dropped to 2.1 the nurse had to call in a DR to check on me.

Thank you for your response to my message, again I appreciate your information. Take care, S

[angel-delight in reply to Fcrooks]

Hi Fcrooks, 

I had a call from Joanne your sister-in-law this evening as you now know she is the friend I was referring to who is helping me. Small world, I have known Joanne for about 40 year's.  I  have found a Rheumatologist Consultant in Scarborough, I have my first appointment next Friday and referral from my GP in Pickering.  Unfortunately Oshawa is too far as I am not driving. I will see how it goes next week. My new GP is doing a series of blood tests which I expected and changed my meds plus added others.

Take care, Sue 

[Fcrooks in reply to angel-delight]

Sue, this was the strangest conversation I had with Joanne as I had not seen Joanne in a long time.   My sister-in-law and Joanne are best friends.   Not sure if you know Wendy & Butch.    I'm happy to hear you got settled and have an appointment with a Rheumatologist.   It is definitely a SMALL WORLD and I wish you nothing but the best in getting your meds sorted out. 

Cheerio, Faye

[kalel in reply to angel-delight]

angel I can't remember the rheumy that I used to see in Canada but I saw him straight away did not have any problems seeing him and all I needed to do was register and give my documents to the GP and I was also seen at the GP. I have lived in a few citys in Canada but never had any issues with the GP.

I can't remember the rheumy name that I saw in Canada but I just rang up the secretary and made an appointment to see someone and then we spoke about a few things. The treatment that you are given in Canada is quite different in comparison to the UK.

I should also say this that I was still getting treatment in the UK when I was living in Canada as well so I hope that also helps you out.

Also if you talk to a Canadian rheumy then I am sure they will talk to you about research drugs etc that can work out cheaper than other drugs but I would be careful because there are risks involved in this.

I loved living in Canada if I don't move to Hawaii or another tropical destination at some point I will move back to Canada

[Angels-delight in reply to kalel]

Hi Kalel,

Thank you for your response, it was very helpful and reassuring. I will check with my sons GP first as they are taking on new patients due to taking on a new GP at the clinic and not bring with her new patients. I am applying for a new health card on Monday 14-03-2016 so I don't have to wait much longer, it was good to hear that you got to see a Rheumy specialist right away. I am living in the suburbs of Toronto so I hope I am as lucky. My UK Consultant would only give me 4 weeks of biologics and one had to be injected before I left the UK, before that I was on monthly infusions.

Thank you for your information it is very much appreciated, take care S xx

[Damaged in reply to angel-delight]

I currently live in Vancouver BC, however I am from Ontario. Toronto has the Rebecca McDonald clinic at Mount Sinai Hospital. Rebecca treated herself very successfully for RD. The clinic has a team with Neurologists, Rheumatologists, Genetisists etc on site. They also have there own MRI , CAT Scans etc. The clinic has an excellent reputation. I happen to meet a Dr Anthony Morotta on a trip to Ontario last year. He owns five life science clinics across Canada. My daughter is in bio-Chem at SFU and I arranged work study for her with Anthony. The irony is they study RD. They have isolated a new protein to identify seronegative people with RD. The next step is to develop a Biologic from this new protein , 14.3.3 The name of the labs is Agurex. The cost of Biologics is extreme hence the protocol. I was very surprised that some in US get Biologics as first line treatment. I actually prefer waiting to see if DMARD's work first. My Rheumy took me off MTX after the recall. I could not believe I was the only patient to bring it to their attention. It is a very dangerous drug already but recall for was extra particulates. That was enough to say no thanks. I also hate the weekly injections. I am so small I need to lie down to pinch a half inch lol

[Angels-delight]

Hi Damaged,

Thanks again Damaged, everyone I know is in the West of Canada and or Vancouver, I have a friend who lived in Toronto when I did about 18 years ago and moved to Vancouver to be with her daughter and another friend from the UK who lives in Calgary. Anyway, I was on MTX for a short time and I was violently sick every Friday the day I took MTX and the next day after taking folic acid and eventually, the consultant took me off MTX and replaced it with Enbrel injections which worked for quite some time until it Enbrel had to be stopped due to other health issues, nothing to do with RA. When I was able to start back on the Enbrel injections they didn't work and they started me on prednisolone, I have been taking steroids on and off for over two years 20mg, reducing to 7.5mg then back up again due to flare ups. Do you know if you can get oxycodone in Canada as I went to a local pharmacy and she hadn't heard of it I take 30mg am and pm each day along with other medications.

Thank you for your response, very much appreciated, take care, S xx

[Damaged in reply to Angels-delight]

Yes you can get Oxycodone here, in fact I was on it for eight years.

[kalel in reply to Angels-delight]

Angel Delight I am pretty sure that this is where I saw an ra dr the Mount Sinai Hospital. I lived in the city centre of Toronto then moved to Vancouver and then Quebec.

Have you looked online maybe if you do a google search you will be able to find out if they sell oxyocodone?

I have not lived in Canada for a couple of years but all I can say is I am sure that things have changed since I lived out there but I do know that there was no shortage of ra drugs for me to try it is just really a question of doing some research before trying anything especially if you are going to try out any of these drugs.

[angel-delight in reply to kalel]

Hi,

Thank you for the information regarding oxycodone that was very helpful, I am hoping to register with a GP at my son's medical Centre this week. I applied for my health card today. It is good to hear that there isn't a shortage of rain medications. I think there is a big difference in the UK they are very strict in the UK when it comes to allowing medications have to try several others and have them fail before you can have biologics.

Thanks KS again for your help, take care, S

[kalel in reply to angel-delight]

you are right there are strict guidelines when it comes down to meds in the UK but I do think that it is good that they are like that because it means that we don't always have the crap meds that are more harmful than good in the UK but on the other hand I don't understand why they won't allow you to buy products like retin a here in the Uk.

Just be careful and do some research if you are thinking about changing meds because for sure you will have a bigge selection of meds that you can take but they can often be new meds etc etc.

Pleased to hear that you got your health card you will be able to go and register with a doc now.

Good luck with everything I am sure you will have a blast in Canada.

[Angels-delight in reply to kalel]

Thank you, I will be very careful. I will be doing lots of research. They do try to give you the cheaper drugs and they don't work the same. I am looking forward to summer here as I always feel free so much better in the warm weather. Some say the humidity makes them feel worse, I didn't feel any worse when I was here last year.

take care, s

[kalel in reply to Angels-delight]

Angel whatever you do don't go for the cheaper drugs if what you are on at the mo is working for you then tell the dr that and make it clear you don't want to change meds.

I was actually in remission with my ra when I was out in Canada but if the weather did get to hot that is when we moved to Vancouver and then we travelled around a bit.

I actually think the weather can be great but when it gets cold just wrap up warm plenty of layers but if your vit d levels are low then you still want to supplement with vit d.

Actually think the main reason why my ra came back when I got back to the UK was stress I was going through a hard time of it and then I let myself go and stopped exercising and that is when the crap hit the fan with me so to speak.

Whatever you do just enjoy your time out there and I am sure you will you def can have a better life I think in Canada but the only thing that I felt at times was they were a bit behind with some things in comparison to the UK.

You take care to.

[nomoreheels in reply to kalel]

Kalel, Retin-A (tretinoin) was discontinued by the manufacturer in 2012 so no longer available to the NHS it's not that they're not allowing it. I have a link to a UK based supplier selling various percentages of tretinoin if you'd like it? A 20g tube of 0.025% costs a smidge less than an NHS prescription (other percentages are available) but they offer discounts for quantities. I think it's made abroad somewhere, but it's made under the original trade name so presume to the same ingredients & carriers.

[kalel in reply to nomoreheels]

really I thought that it was banned in the UK.. oh no I don't need a prescription for it but thanks for the thought.

[nomoreheels in reply to kalel]

No, this is c&p'd from The Pharmaceutical Journal 21.7.12

"Retin-A (tretinoin) gel 0.01% and 0.025% has been discontinued by Janssen-Cilag. No stock remains of the 0.025% gel. Stocks of the 0.01% gel are expected to be exhausted in October 2012. Medical information on 01494 567444."

[Hidden]

Welcome to Canada Angels-delight. We have the same meds as the UK. Don't worry.