I'm new here: both to RA and to the message boards. **waves, but not very hard, as the elbows are having a bad day**
I was diagnosed this week, after a year and a half of symptoms and negative RF. At this point, I'm on Plaquenil 200 b.i.d. and Tramadol (Ultram) for the pain. Ultram doesn't really help the pain, but makes me high enough that I don't mind it as much.
Here's my question (or I should say one of the 300 questions I have:) My family is planning a move to Moscow, Russia next summer. We'll be working with orphans and street kids there, on a long-term basis. Our plan has been to have our minor medical needs taken care of at the local missionary clinics, which are pretty modern. For any major medical incidents, we'll fly to Helsinki, Finland where medicine is state-of-the-art. At least, that was our plan until I was diagnosed.
My Rheumy strongly advised me to chuck up the Russia plan and stay in the United States because of the "careful monitoring" and frequent, high-quality medical care I'm going to need. Problem is, he didn't give me any idea what the future is going to hold, in terms of monitoring and treatment. Frankly, he didn't tell me much of anything. He's going to get an earful of questions when I see him next month.
So what's ahead for me? Is it really a regimen that won't be do-able in Moscow? I can have frequent eye exams there (Plaquenil) and access to pain meds. And blood tests and x-rays.
Do I have to give up my life dreams?
RA is different for everyone. Some mild, some moderate, some severe. It can affect your body in many ways. Not just joints, lungs, tendons and many more. Every person's RA affliction is different.
I'm quite sure your doctor is looking out for your best interests. RA can be quite difficult and it sounds as though you are just in the early stages. So neither your doctor or you or anyone else can tell you what to expect. You may stay mild your entire life or wake up one morning in excrutiating pain, weak and almost unable to move. Will you be in a pickel if that happens in Russia?
Plaquenil is usually the first drug you are put on. Then to that others are added and then the biologics. Are you going to be able to get the monthly blood tests while on these other drugs in Russia?
I would highly suggest sitting down with your Rheumatologist and discussing your questions and getting more information, alot more information. And just what these missionary clinics can handle; because RA is not a minor medical need.
You should note that the drugs used to manage RA also suppress your immune system. If you are going to be in contact with others who are ill - your body will be impaired in fighting off disease and infection. You could get very ill, very quickly. Not to mention if the drugs used for RA are even available over there.
I think you need to educate yourself on RA also. Just search Rheumatoid Arthritis on any search engine and read about it. It's a very complicated disease. You can also go to www.arthritis.org to start with.
Only you can make a decision appropriate for you. But you need all the knowledge you can get to make an educated decision.
Unfortunately it is hard to predict what is ahead of you regarding progression of the RA since it effects everyone so uniquely and differently. I can't really tell you to give up your dreams. Especially this one since it is so worthwhile.
It sounds like you do have a good plan in place for any major medical incidents that would happen while you are in Russia. The only thing that I would be worried about is if your RA did progress and you would need to start on medications that would require you to inject them. Would be able to get such medications in Finland? Some of those meds require refridgeration also. Would be able to bring the syringes and needles into Russia?
Plaquenil can take up to 6 months to work so hang in there. If you feel you are not getting any relief or it is not working, make an appointment to go in to your rheumy and discuss different medications. Ultram is one of the mildest painkillers that there are. It sounds as if this is not working well for you. You should get relief from the pain with the painkillers and not just be zoned out so that you don't care about the pain. You might want to discuss a different pain med option too.
I admire what you are going to do over in Russia and hope that you can go and do it.
Welcome to the board! You will find a lot of support and a lot of caring wonderful people here. Keep us updated on how you are doing!
If you decide that you are able to go, be absolutely sure that you have a doctor lined up to handle your care. This absolutely needs to be a Rheumatologist. You want to make sure that your insurance will pay for everything. Even if you can get your medications, you may have trouble getting them from one country to another. So, be sure to check on that.
It would be taking a very big risk to do this because the treatment consists of suppressing your immune system. The task of taking caring of others can expose you to many infections and even the simplest, most common infections can cause serious problems.
I suggest trying to contact a Rheumatologist in the areas where you will be. Then coordinate with your Rheumatologist here. If this is something you feel is essential to do, then take all the precautions.
However, sometimes we are turned from a path we thought we were supposed to take be such an event as this. You are going to have to listen well with your heart and soul as to what is the best thing to do.
Several people here have travelled to places like Rome and Mexico. But is tiring and sometimes it has cost them in set backs. Early in your treatment, it is very important to have the constant monitoring and adjustments to medications. Ideally, you would want to try this a couple of years from now when you have a better idea of how this disease is going to affect you.
Best of luck and welcome here.
Blue Heron, the others have made the really important points:
Will there be a good, experienced doc there when you need him/her, and regularly (and will language not be a barrier)? Will insurance cover every kind of care you might need? Are you willing to take the greatly increased risk of infection that comes from travelling, living in a foreign country, caring for others? Do you understand the trigger factor of RA-exhaustion and stress triggering major flares in a lot of people?
I'll ask: What does this move to Russia mean to you personally? Is it a huge, personal, lifelong goal? How will you feel personally (not how will you feel about letting someone else down, your pride, whatever) if you don't go?
This has to be factored in. If this trip has great meaning to you, deep down, you have to consider whether, if you can do it as safely as possible, this might not be the best time for you to go before (possibly) RA gets worse or trickier fo ryou.
I love to travel, love to go out of the country when I can. I hope and plan to continue. But my whole view of this is changing with RA. Some places I thought I would go and physical adventures I thought I might try, I now think "not a good idea any more" and, given the risks and insecurities, I'm ok with that.
I also have to know more about my RA (I'm new at this too) before I take off on any big trips. And I'll be totally compulsive about checking all those basic things --insurance, available docs and meds, ability to minimize infection risks, abilty to get back home quickly if necessary, etc.
On the other hand, if I felt I could never travel again, explore the world at least in areas where I feel reasonably safe and secure, it would really take something away from me that's important, and this will be a big factor as I make these decisions.
Good luck with the Russia decision. Take your doc and the worry-questions seriously, and take your heart seriously too.
Dear Blue Heron,
When life interferes with our plans, we have to make new ones.
Is it fair to saddle the missionary clinics with someone who is chronically ill? Is there some way that you could discuss your case with the missionary clinics, and let them advise you?
Before you make a decision, there is an effective treatment for RA that many rheumys never tell their patients about. Please take just a little time and check out these websites: www.roadback.org or www.rheumaticsupport.net
This type of treatment needs simple monitoring, but nothing like the "heavy-duty" and dangerous drugs many rheumys are using. All the best. Pat
Pat, I truly believe you are just trying to be helpful, but I do think a word of caution is needed. While I think it is very wise to consider antibiotic treatment, and I have read success stories, it is not the "be all and end all" of treatments. There are members of this board who have tried it and have had little or no improvement in their disease. It sounds like you have had great success with it, and that's awesome. It's a relatively new way of treating RA, and there are still many questions to be answered. Just as with the "heavy-duty" drugs you mentioned, as patients we must weigh all our options, educate ourselves and work with our physicians in coming up with the best treatments.