Op by your username I’m assuming you’re in Canada? If so, look into Blue cross for help with your meds…here in Alberta they partner with Alberta Health Care to cover certain drugs 100% with NO charge to the patient. For instance, people receiving at home chemo get their meds fully covered by Alberta Health Care but it’s through the special Blue Cross Alberta Health Care cancer drug plan. I will even get my Tamoxifen covered. So, they may cover yours too on a similar plan?! Basically, if drugs are needed to sustain life (chemo, etc) Alberta says it doesn’t matter how or where you have to take them (home or hospital), so Alberta Health Care funds them!
Hey eclipse! Yes, I’m in Ontario for the time being and relocating to Nova Scotia by September. In Ontario OHIP covers almost everything, there have been a few blood tests they haven’t and I can get refunded through the Ministry of Health if I want to. If this treatment doesn’t work or stops working I will have to go on the next line of treatment which costs $22,000 a year and have been told Trillium will pay for it. I have to do some research to see who/what will/will not cover my treatment in Nova Scotia.
I honestly could not imagine having these medical problems in a country that doesn’t have a good health care system.
Love your signature!
1 Like
@CanadianTrotter I am glad to hear the meds are working for you. I hope the side effects decrease as well. Regarding the flu shot, though–you CANNOT get the flu from a flu shot. It’s a killed virus, so all it can do is stimulate an immune response, which is what you want it to do. I think the worst case is that it wouldn’t provide as much immunity, but something is better than nothing. On that last statement, of course check with your doctor; I get the feeling they would agree with me since they are pushing you to get vaccinated. But there is no doubt that you can’t get the flu from a flu shot.
Rebecca
1 Like
But some people do get sick or have a bad reaction after getting a flu shot, a friend just recently was sick for several days after hers and my doctor’s nurse said she was sick for over a month. When I asked my doctor he said that there is a chance I will have a reaction but that he would rather see me get it because my immune system is low. I had my bloodwork done today so I should know how low my immune system is by Wednesday when I go in to see my doctor. I was going to make my final decision then whether to get the flu shot instead of the methotrexate shot but my friend is coming to stay for 3-4 days and I don’t want to have a possible reaction spoil our time, so I’ll put it off for another week.
I was diagnosed with seronegative rheumatoid about ten years ago; it took me a few years to finally get that diagnosis. My symptoms were quite clear, but because I was so young (very early twenties) and had some other conditions muddying the waters it took a lot of effort and time to get a diagnosis. I am sorry to hear it took so long for you to get diagnosed, that is unfortunately all too common.
I have gone through nearly every drug approved for Rheumatoid treatment(Plaquenil, Humira, Enbrel, Orencia, Simponi Aria, Xeljanz, Remicade, Actemra…I am missing some, but you get the idea). I had an anaphylactic reaction to Actemra unfortunately, as it worked the best for me. Currently, I take Olumiant daily, 25mg methotrexate injected weekly, 1 mg folic acid daily, as well as cyclobenzaprine, Cymbalta, and gabapentin. I also take a modified form of prednisone, called Rayos, that is a delayed release taken at night. I would probably be in prison or inpatient psychiatric care if I were to take regular prednisone. Thankfully the modified version has only had physical side effects. I also have to take medication to sleep for more than a couple of hours. I also have taken leucovorin to reduce side effects from methotrexate; I am unable to take methotrexate orally so I do the injections, but even with that I have struggled with pretty bad nausea, dizziness, and body aches after I do my shot. I call it my methotrexate hangover. Recently I have discovered that taking B12 has also helped with some of the methotrexate side effects. Vitamin D is another that I have to supplement.
I would also encourage you to get a flu shot. You definitely cannot get the flu from it. It may make you feel a little under the weather for a day or two, but getting the flu while on immunosuppressive treatments (such as methotrexate and prednisone among others) is incredibly dangerous. It really is worth potentially feeling a bit sick for a short time to reduce your overall risks. I have actually had to be more careful about being around groups of people, as pretty much every time I am around more than a few people at a time I usually get sick. I actually ended up changing jobs/careers because I was sick more often than not when I worked in an office environment.
As far as hair loss on methotrexate, I have definitely lost some hair, but my hair isn’t patchy or anything like that, it’s just thinner now than it was.
If you have any questions for me I am happy to answer them. My father-in-law also has rheumatoid so between the two of us we have a fair amount of experience with rheumatoid. I am sorry that you have to deal with it, but I am glad that you are able to get good treatment and hopefully get to managing it better soon.
4 Likes
Hi myvanya, thanks for posting and sharing your experiences!
Being seronegative was extremely frustrating and if it wasn’t for being sent for an ultrasound during a flare up I would still be undiagnosed. This may sound bad but it feels good to hear from another seronegative sufferer.
How long have you been on the methotrexate while still feeling the side effects? Your input of all the different medications(like RMJAcob’s) is very helpful so I can research them to learn more. I have no idea what the next line of meds are if methotrexate/leflunamide don’t work well enough but my RA doc gave me the impression that they are the end of the line for treatment.
I’m seeing my GP tomorrow and I’ll mention the B12. My doctors, RMJacobs and now you have convinced me to get the flu shot and suck it up if I have a bad reaction because yes, the alternative is much worse and quite dangerous.
Thank you for your kind thoughts.
Yay on deciding to get your flu shot. I hope you have no problems afterward.
There are so many meds that are available for RA these days. Methotrexate and leflunamide are the beginning, not the end. Even for the cheaper, generic stuff, there are options: plaquenil, sulfasalazine, and some others I can’t think of. And then the biologics are a whole other world.
Rebecca
2 Likes
Well since you helped talk me into it you can bring me chicken soup too! :lol: I told my doc if I get sick he can bring me some for a week! It’s funny how people who deal with chronic pain get sent over the edge by the little things.
I’m going in tomorrow morning to get it.
Liver enzymes came back elevated so now I have to wait for more bloodwork to be done and come back before I can continue with the methotrexate. My liver levels have gone up before and back down quite quickly for unknown reasons so hopefully this is just a blip.
If you value your life, you will not have me bring you chicken soup. I never learned to cook. I suppose I could make you the crappy, high sodium junk from a can–maybe then you’d be safe.
Trust me, a flu shot would be the least of your worries! 
I find the nature of pain and other kinds of discomfort to be fascinating. I dislocated my shoulder coming off a horse once, and worked the horse on the ground some more, untacked, groomed, fed, and led him nearly a mile to get him to his current pasture. I was fine until I got home. Then I was in agony.
When I still had my teeth, dental pain was the worst. I just could not deal with it. Yet my RA pain was probably way higher on the pain scale, and I didn’t slow down for it in those days.
I recently crashed my bicycle pretty badly. The first three days were just awful. My RA pain disappeared during that time, and didn’t come back until the fourth day.
Rebecca
I got the shot today after my friend left after her extended stay. It’s my first shot so sorry for the naive questions…does everyone have to fill out a release form full of questions and sign it before they get their shot? One of the questions was if I am allergic to eggs, I don’t have a big allergy but am extremely sensitive to them and they make me quite ill for a few days. Apparently the flu shot has some sort of egg protein in it and that is one of the things in OT that gives some people ill effects.
Not feeling any side effects yet except a little tenderness in my arm so fingers crossed!
Pain and how different people deal with it is amazing. I was hit by a car as a pedestrian and walked out of the hospital 5 hours later on 6 fractures, a dislocated shoulder, whiplash, concussion, flattened sciatic nerve, numerous soft tissue injuries and internal bleeding…yet taking the tape off my arm after getting bloodwork will send me right over the edge like a big crybaby! RA pain can be acute and agonizing yet hit my thumb with a hammer and I scream like a banshee.
Yes, I’ve had to fill out a questionnaire and sign a release before any vaccinations for a lot of years. I don’t remember when that started, but it’s certainly been a long time.
Did you tell the doctor or nurse that you have an egg sensitivity? That usually means you need an alternative vaccination. I’m not sure what the options are. There is a nasal mist, but I’m pretty sure those of us taking RA meds usually can’t have it due to it being a live vaccine. I’m not sure what needs to be done for a sensitivity versus an allergy.
Rebecca
All of my doctors insisted that even with the egg sensitivity it was still best for me to take the shot. My pharmacist said that they carry the shot that has less egg in it and that’s the one she gave the doctor to give me. I’m actually feeling pretty good, just a bit of nausea and upset stomach so far.
I always have to fill out a questionaire before getting my flu shot- it’s a standard thing.
I have been on methotrexate since I was diagnosed and have had side effects the whole time. But that is definitely not the case for everyone. My father in law has been on it longer and has had no side effects at all really. So it very much varies.
I also have had elevated liver enzymes quite frequently. It is common with methotrexate. That is part of why they say to avoid alcohol if you take methotrexate; it is hard on the liver so it doesn’t need excess strain. That being said, I actually do drink occasionally now and it hasn’t impacted my lab results, but I do it knowing it is NOT a good idea and do it in moderation. I did have to go off methotrexate briefly once because the liver enzymes were super elevated, but once they got back down a bit I was able to resume it. As a general rule my doctor isn’t terribly concerned unless they get very elevated, but that may be because mine have historically been somewhat high. They also generally go down when I can lose weight, but that is pretty much impossible for me when I am on any type of steroid.
I would also say to be aware of how long any sickness you happen to get (like colds, bonchitis, etc) is lasting. I just had bronchitis for over 3 weeks before going to see a doctor and I should have gone much sooner. It turned out it was bacterial and not viral, so I needed antibiotics. I try to be very careful not to overuse antibiotics (which was why I delayed so long), but I really should have seen a doc more quickly than I did.
Glad you got your flu shot and it sounds like it went relatively smoothly. Hope you are having a good week!
Yeah, I figured it was standard to sign in case something bad happened and doesn’t hold them accountable. I did get a large lump in my arm that was quite sore but I’m assuming that’s normal since it’s given in the muscle.
I’ve been off the methotrexate for almost two weeks now and can definitley notice how much it was working, still on the leflunomide so it’s not unbearable and I haven’t had a flare up yet thankfully. I had my bloodwork done today to check liver levels before I can get my next shot on Wednesday, hopefully they’re down and I can resume treatment. The Synovitus has calmed down a bit but isn’t going away and it can be quite painful.
Hope you’re having a good week as well!
Hey Rebecca!
You mentioned that you convinced your doctor for you to take 2mg of folic acid 2x daily to keep your mouth sores under control. Do you find that taking it 2x daily more effective than 1x daily?
Reason I asked is I’m starting to develop mouth sores now, I first thought it was thrush but doctor confirmed it’s a methotrexate side effect and has me on 5mg daily now. He said to take it in one full dose but I wanted to know if you think the 2x’s makes a difference.
I’m not sure if the timing makes a difference. Certainly the amount does. But I haven’t discussed the timing with my rheumatologist.
Is yours in five 1 mg tablets, or one 5 mg tablet? In other words, could you portion it out if you wanted to?
I still get mouth sores once in a while, just not constantly like I used to. I have to be careful when I’m traveling because it’s harder to rinse my dentures after every time I eat, and that has a lot of influence on whether I get sores or not.
Rebecca
I was prescribed 5mg tablets back when I was supposed to take only 1-5mg the day after the injection, then my GP changed it to 2.5mg daily so I was splitting the pills. Now I’m just taking the full 5mg daily in the morning since Thursday, hopefully I’ll notice a difference soon. I just remembered you split your doses up and wondered if it made a difference from just one full dose.
It’s mostly bothersome when I eat and afterwards and sometimes dry mouth during the day, doctor said there are mouth rinses that may help so I’ll talk to my pharmacist.
Another RA rider here, along with several other autoimmune illnesses. I maintained fairly well on methotrexate weekly for about 9 years- taking the injection followed by folic acid 5 mg daily (not on methotrexate day) This dealt with most of the MTX side effects. (My blood counts dropped suddenly about 18 months ago due to MTX so am now on biologics).
Hey demidq…thanks for adding your experience!
Did you take another daily chemo pill paired with the methotrexate?
Do you notice any differences on the biologics or a noticeable improvement compared to the methotrexate? Do you have Synovitus along with your RA and if so does your meds help lessen the severity of it?
I’m finding the methotrexate helps a lot with the joint pain but the synovitis is still moderate to severe and still fairly painful. I still have quite a bit of joint swelling(can’t make a fist on my right hand)but the specific joint pain is less. My RA doc said that if the methotrexate and leflunomide doesn’t work well enough she is putting me right onto the biologics. Does Trillium help with the high cost of the biologics?
I was lucky that my RA was pretty well controlled by MTX alone for several years. When my bone marrow became suppressed ( blood count dropped) MTX was no longer an option and I switched to plaquenil and sulfasalazine and now Actemra, a biologic.
The synovium lines all joints, and produces synovial fluid. RA causes inflammation of the synovium which then produces extra synovial fluid. This causes the joint to swell and become painful, and when there is active inflammation the joint feels warm and will often look red. Persistent inflammation or synovitis leads to damage of the cartiledge and bone. It is important to treat RA early and aggressively to prevent this damage!
I’ll send a PM regarding Trillium.
