Last Wednesday, just as I was about to leave for a week-long vacation, the rheumatologist called and said she does think I have psoriatic arthritis. The good news is that I finally have a diagnosis. The bad news is, who wants PsA?
The doctor wants to start me on methotrexate. I told her I've heard horror stories about that drug and I'm really scared to take it (since almost any drug I take makes me nauseated). I said I'd think about it while I was on vacation and decide whether to try the MTX. But I still haven't made a decision. I'm very concerned about the side effects and the cost. I asked the doctor if there were any other options I could try first. She said nothing else (except the biologics) is as effective for treating both the joint pain and skin psoriasis.
What should I do? Almost every drug makes me sick, so I'm sure the MTX will, too. I can't deal with that. Any suggestions? What would you do if you were me?
But I do think it's time to seek treatment for the PsA. When I went hiking during my vacation, I had pain in my hips. I've been a hiker for 28 years and never had that problem before, so I'm pretty sure it's got something to do with the PsA.
When I was first dxed with PsA I was reluctant to use MTX because of the side effects. I have issues with side effects on almost everything I've ever taken. So I I found this site and read through everything getting some awesome tips for dealing with the side effects of the medication.
I decided to bite the bullet and just do it. I followed everyone's advice and ate a meat and potatoes type meal on Friday night, took my MTX right before bed, and slept through most of the side effects. You know what? Little problems with upset tummy every so often and tired most of the day on Saturday but really nothing major. I was expecting soooo much worse.
I've been on 8 pills a week for almost a year and next month I get to cut back to see if my dosage can be lowered. I changed my diet to drop some excess weight and my focus is on keeping my mobility. This disease can make you feel hopeless because of the chronic pain. What I've found is that if I concentrate on the parts I can control (diet, exercise, activities) and don't focus on the things I can't (flare ups, swelling, medication side effects) I can have PsA without letting it define my as a person.
I was the same way when I was first diagnosed. But you have to remember that although there are side effects to every medication, left untreated the PsA will for sure do more damage to your body. Since I was diagnosed I have developed pre-diabetes. I also have some issues going on in my brain that my neurologist thinks may be related to auto immune disease. You have to get your PsA under control & until you do your immune system will continue to attack your joints and possibly other places. I am NOT trying to scare you.......I just want you to be aware how serious it can get if left untreated. Keep us posted on what you choose to do.
I had exactly the same concerns as you and resisted taking mtx for over a year. I became so fed up of the pain that I gave in and decided to take it. I found out that i experience absolutely no side effects and the mtx works a treat. I am usually nauseous at the drop of a hat but have no probs with mtx. I would suggest giving it a try - I think it can be injected if your stomach can’t handle it.
Agree to go on MTX with the understanding that if it gives you side effects your doctor will make the case to your insurance company to prescribe you a biologic. You can play up the side effect a bit... being sick may not be enough because there's an injection form of MTX. Your doctor will also push to add a biologic if the MTX doesn't fully control your PsA. Again, you can play it up a bit if you need to during the followup visits.
The biologics are expensive, but insurance companies allow them if the doctor and patient have tried MTX for a reasonable amount of time (My doctor got me on Enbrel in 4 weeks, and does this for all his patients.)
As for cost, MTX is very cheap. If you have commercial insurance, the biologics are cheap also because the drug companies have programs to help you with the copay/deductible.
MTX won't really hurt you short term. Long term it will effect your liver, but your doctor will watch for it. The damage is reversible.
Enbrel is amazingly safe short-term and long-term.
The biologics work better than MTX, but oftentimes people need both. You can cross that bridge if and when you get to it.
Welcome aboard, but at the same time, sorry you need to be here! Milo's my dog, Elizabeth, Gwynneth and Andrew have already said just about everything I can think of to say. It's not great to have PsA. It's not great to have to take mtx. But it's even worse to let your PsA get worse and have to deal with all the ramifications PsA has to offer. I have no words of wisdom on mtx, as I can't take it due to liver issues.
Elizabeth - I've been diagnosed as pre-diabetic since my diagnosis as well.
I love methotrexate for the improvement it made in my life, the low cost, and the lack of side effects. I split the dose up to avoid stomach side effects. This drug saved me, and I've been on it for nearly 7 years.
I too was hesitant to start the Methotrexate, having heard all the horrible things. When I started it, I had some side effect the first few times, basically feeling like a really bad hang over or a really bad case of the flu, but it only last a day or so. The more times I would take it, the less the side effects would be. Now I don't really have any, other than fatigue, which I have anyway, so no biggie. I will say, however, that now, entering my 4th month of Methotrexate treatment, that it has NOT done me one bit of good though. I know it has helped others, so maybe I am just different in that regard. My doctor says I need to complete 3 more months (6 months total) of MTX treatment before moving on to the Biologics...not sure I can last that long
My doctor puts people on MTX for one month before adding a biologic. They've done this consistently for many years. You might want to call your insurance company and also call Enbrel and find out the procedure. You may be able to hurry things along.
So what does the future hold for a PsA diagnosis? I am still in the newbie stage of mentally wrapping my arms around this but what really does the future look like? Will it be day to day on whether i feel good, bad, pain, or no pain? I would really like to hear what I should honestly expect. Comments?
nym said:
Welcome aboard, but at the same time, sorry you need to be here! Milo's my dog, Elizabeth, Gwynneth and Andrew have already said just about everything I can think of to say. It's not great to have PsA. It's not great to have to take mtx. But it's even worse to let your PsA get worse and have to deal with all the ramifications PsA has to offer. I have no words of wisdom on mtx, as I can't take it due to liver issues.
Elizabeth - I've been diagnosed as pre-diabetic since my diagnosis as well.
You've probably heard this before. It's very individual. For some people PsA is positively awful. For others, the meds work great and they forget the even have the disease.
I've put this in my profile, but to summarize it, I was diagnosed almost a year ago. For a long time now, I've had no symptoms of the disease whatsoever.
I get a mild injection site reaction from the Enbrel (which I can control with anti-histamines), but other than that I've had no side effects.
At this point, I don't expect my life to be any shorter or of any less quality because of the PsA. I'm sure something will get me, something gets everyone, but PsA is not my main concern.
I didnt want to take methotrexate but i did and it has helped. I take 3 a week. Its really going to depend on how bad your symptoms are. Another much weaker option would be sulfasalazine which is a DMARD (Disease Modifying Anti-Rheumatic Drug) I started on that and it helped a bit as well. but it wont do the trick long term. I now take that and the methotrexate. Might be something you can research or talk to your dr about. As for side-effects w the MTX i havent had many horrible ones apart frm some upset stomach issues.
i got to peek at my labs today, as I don't see my dr. until the middle of Sept. Everything is wnl. I have pain in my neck, shoulders and back every day. I can't turn my head all the way to the left or right unless I keep to my phys therapy and massage schedule which is expensive and inconvenient. I've been on mthx for nearly 7 yrs for psoriasis, so it's not going to cut it for treating Psa. I believe my rheumy will put me on enbrel next month. I'm looking forward to having good days, and being able to exercise again. I've battled plantar fasciitis in both feet for 1 3/4 years. Am I right to look forward to a med like Enbrel?
I would skip the MTX and go straight for Enbrel. I'm on Enbrel and it has helped me a lot. I haven't had any side effects, except I think that I have a bit more fatigue, but I'm not sure if the Enbrel is causing that or the PsA.
I waited until I could barely walk to seek treatment. I would say wait until you can't stand it anymore but who knows the damage it can be causing your joints. It does take awhile for the Mtx to work but the longer you wait to start, the longer the process will take. Listen to your body and your rheumy. Good luck!
I am also deciding whether or not to start methotrexate or some other medication. I am a person who rarely takes a tylenol. I also have these flares that are only about a week a month and the rest of the time is ok, was curious if anyone else has monthly flares? I get a week of severe body pain followed by 2 days of fatigue followed by massive rash outbreak of psoriasis, then the rest of the month is ok other than achy joints I can deal with.
Thanks for all your input everyone!
I mentioned being on Ridaura in my reply to Daniel76's question about diet below. I don't know why it's hardly prescribed or mentioned in discussions here. It's done wonders for me and the side effects are very manageable.
I had very similar symptoms to you Daniel, and instead of sending me down the biologics path, my doc suggested I try oral Ridaura first. It's old school, but the side effects are minimal. I started taking a 3mg pill every day and bumped it to 6mg every other day. At three months, my plantar fasciitis disappeared, and gradually with the help of physical therapy the rest of my joint pain has also dissipated to 10% or so. Now the only thing I'm coping with now is fatigue, which is mainly due to the travel and level of energy required for my job. Ask your doc about it. It's not nearly as common as the others, but it's worth looking into if your case isn't as severe.
BTW - to get the initial inflammation to go down (Ridaura generally takes 3-6 months to fully kick in), I did a 10 day course of 3-5mg/day of Prednisone. Any aches and pains I deal with on a daily basis are relieved by a single course of Aleve.
YEAH!!!! My liver specialist told me today that it wasn't the PsA meds the cause of my liver troubles, so I am back on Leflunomide (Arava)!!! It works wonders for me and it is not infused. It isn't as expensive as the infusions, but only slightly higher than Methotrexate. I have NASH (Non-Alcoholic Steatohepatitis), level 3 of 4 levels. My diabetes, cholesterol and triglycerides high levels are the culprits. Prednisone is the cause of my diabetes.
nym said:
Welcome aboard, but at the same time, sorry you need to be here! Milo's my dog, Elizabeth, Gwynneth and Andrew have already said just about everything I can think of to say. It's not great to have PsA. It's not great to have to take mtx. But it's even worse to let your PsA get worse and have to deal with all the ramifications PsA has to offer. I have no words of wisdom on mtx, as I can't take it due to liver issues.
Elizabeth - I've been diagnosed as pre-diabetic since my diagnosis as well.
I am also on Mtx upped to 10 pills a week. Sometimes I am sick, sometimes not. If I am sick, it's only in the morning & then eating helps. But I am starting Enbrel next week. My rheumy thinks 10 pills is too much. (this is a new doc). If you split the mtx dose up it will be better. Think of the positive! You will feel better.