Hello everyone. Thank goodness for Dragon Dictate that allows me to write this without using these hands of mine! I've been living well with chronic fatigue syndrome for 20 years and psoriasis for about 10. After a traumatic accident in March, my body was swept with a feverish wave of arthritis. in the last week, it seems to have spread to my spine… Burning sensations up and down my back.
My rheumatologist says that it's "probably" psoriatic arthritis. After the naproxen had no effect, he prescribed methotrexate and said that it's good that were getting started early. I'm also working with a naturopath who suggests that I hold off on the methotrexate as a last option. I'm in a lot of pain every day… Mainly using hot baths, icy hot, rest, meditation and distraction to survive. Doing lots of crying. I've had a good diet for a long time and I wonder if all the supplements that I'm taking are having any effect.
My question is this: in your opinion, is it okay to hold off on the heavy hitter medications? Are there medications that are important to start right away to slow the progression? Other medications that are less toxic than methotrexate that should come first? Should I be less afraid of the methotrexate that I am? I know these are all questions that my rheumatologist should answer, but unfortunately, his bedside manner is horrendous.
Man, this has been tough. I make my living as a musician and use my hands and elbows and back and knees for just about everything that I do. :-) Thank you for any guidance. It's all fairly new to me.
If you hit it hard and early you can have better outcomes than waiting.
I also see a naturopath and take supplements (digestive enzymes, probiotics, etc). I tried prednisone steroid and there was no change after 3 months. I stopped that and started methotrexate. After 3 months and 2 increases, there still wasn't any positive results. The rheumatologist said he thinks the supplements are interfering with the methotrexate. So he asked the naturopath if I could stop the supplements for 2 months trial to see if it makes a difference. That was July 15 and still no change. I"m on 8 pills of mtx. The rheumatologist said if there is still no change after 2 months without supplements, then I can re-start the supplements because that's not the thing that's causing it. Maybe my PsA is just stubborn?
I've had pain every single day since the ending of last year. Some days are worse than others and I also get to the point of crying. I'm allergic to NSAIDs, so am not allowed to take sulfasalazine. I found wearing elastic wraps/braces on elbows and compression gloves have helped some with the pain.
I'm sorry, but I'm fairly new to this, too, and don't know about the other meds because I haven't tried them yet. I know something has to start working soon so that I won't end up with joint damage. This process has been long and slow. I'm tired of suffering every single day.
You asked about trying alternatives. Why not use both? See if you can get into a medically induced remission, and then take it from there. The general rule is to be aggressive with treatment. And as a reminder, these medications all take time to work. It sounds like you've already been doing a lot to support your health.
You asked about toxicity. I held off as long as possible on MTX, as my son was still nursing. But it was really clear when the time came to step up the meds, and I weaned him. (BTW, he was quite old when I did this, so I didn't feel all that bad) MTX didn't work well for me, so I'm on leflunomide now. But the point is, I only held off because I couldn't use MTX due to breastfeeding. I wasn't overly concerned about toxicity to myself, as I understand that there are tradeoffs. Pain from inflammation can be managed. But pain from damage can be much tougher to deal with. I would rather minimize any damage. Especially since I have a lot of issues with osteoarthritis in my hands as well.
Somehow I missed your arrival and your post. Sorry! Welcome to the PsA board. I hope you find it a good source of support and information.
You ask whether you should be less afraid of MTX. Well, I can certainly understand your fear. Been there. But I do think you need to be MORE afraid of the disease. Make no mistake about it: this disease can be mild, but it can also be aggressive and highly destructive.
Low inflammation markers with PsA don't necessarily mean that your disease is mild. My CRP has never been particularly high, and it only crept into the "red zone" fairly recently. That was after my having had undiagnosable aches, pains and fatigue for many years, two knee replacements, erosions in my feet, one hip that has been replaced and one that needs it. In that series of events, my diagnosis came after the erosions in my feet.
You're going back to see your rheumie. Why not do some reading so that you can go in armed with lots of good questions? (Given his terrible manner, the conversation isn't going to flow easily ... may as well carry your agenda!) In the "Book Reviews" section (tab in the green bar above) is a book which I recommended. The Kindle version is a bargain. If you don't have a kindle, you can get a Kindle reader for your pc.
Is it OK to wait with the heavy hitter meds? Sure it is. But as Marietta says, hitting this disease early and hard gives you a better chance at a good outcome. There is no cure for joint damage.
Wishing you well!
Welcome to the group! I also seem to have missed your arrival, but I’m glad to greet you now.
You will hear this phrase over and over again, “Early and aggressive treatment with DMARDs and Biologic drugs are the only way to prevent inevitable joint damage from PsA”. Seriously, you will hear it a ton. It’s true. While I do believe that complementary therapies can help control symptoms and are beneficial to many people, with out those hefty medications controlling the disease itself permanent joint damage will result.
It is important for each person affected by this disease to educate themselves. You will be your best advocate. Seenie’s book, is a great starting point. I’m a nurse, but I read it, and I did get a lot out of it. You can also get good information from the Psoriasis Foundation and the Arthritis Foundation. There are articles that are written for lay people and are easy to understand.
Your rheumatologist, regardless of his bad bedside manner, does know more about PsA that any other type of doc will. After you have done your research, reevaluate what you think of him. Try to see if he knows what he is doing. Is he trying to aggressively treat your disease? Is he following the treatment that you have read about? If he is, maybe you will be better able to deal with him, even if he is a bit of a jerk. I only say that, because its hard to find a rheum who is knowledgable AND nice. We usually have to pick one!
This is a long and rough road. The initial months are the hardest for all of us. Don’t be afraid of frustration and confusion. It will happen. Each day is a new day, and you will learn more all the time. You WILL grow stronger and be better able to handle all of the unknowns. Until then, we are here to support you.
It sounds like you're going through a lot at the moment, between the pain, the disease, and the conflicting medical opinions. Sorting out what's best for yourself and coming to terms with all living with PsA includes are perhaps the hardest parts of this disease.
I'll frame my response by telling you my story ... I come from a "conscious living" background and have had health issues my entire life. I was finally diagnosed with PsA at age 36. I had other health complications, and needed to get testing, then more testing, then a biopsy, then more testing, over the course of 8 months or so after my diagnosis. I tried dietary changes, supplements, acupuncture, etc. while waiting to be able to get medical treatment. My health continued to decline over this period of time. I went from walking on my own two feet to using canes, to crutches, to a wheelchair in a matter of weeks. I had increased damage visible via x-ray after just three months. PsA can be that aggressive. I was seeing a rheumatologist for my PsA treatment and a naturopath for complimentary care - and my naturopath was the one that told me flat out that I needed to take whatever drugs were offered to treat my PsA because the damage is not reversible and remission isn't guaranteed. I went on Enbrel as soon as I was able. (I'm unable to take MTX due to autoimmune hepatitis.)
So my response to you is this: I would encourage you to seek treatment with whichever PsA drug (one that will stop the damage) you choose. I also encourage you eat a healthy diet, take appropriate supplements (many people with autoimmune issues are deficient in B and D vitamins, some in magnesium - these can be tested for), and generally help your body to be as healthy as it can be. You can also check out our "Complimentary Therapies" forum for more information and to ask questions about more "natural" healing modalities: http://discussion.livingwithpsoriaticarthritis.org/forum/categories/complementary-therapies/listForCategory.
I see a naturopath as well as a Rheumy and Family MD and Internal Med and Neurologist. My naturopaths approach was take the meds to limit the damage and let’s get everything else to the max to help support the Big Bang drugs and ay be not need as many in the future. She is very much of the idea that there are many branches on the tree of health and let’s use them all for a better whole health. You need to be comfortable with wat you take to treat the disease, it is in you. For myself, I have lucked out all my docs work with me and respect each other so I have not had to deal with much differences of opinion. I choose to hit it with everything I could.