Rheu Arthritis & Type 1

Type 1 and LADA
1

Anyone out there have RA and Type 1? I just got diagnosed a week ago with RA and am supposed to start taking MXT. Everything I have read about MXT scares me, but if I have to take it... so be it.

My concern is all the MXT side effects... The RHE didn't test my liver or kidney function before prescribing the MXT. All the med paperwork says that needs to be checked... along with chest xrays. Being Diabetic, the liver/kidney concern is a BIG concern to me...

The RHE also didn't tell me to consult my ENDO or that he'd send any info to the ENDO...

Am I just being a coward or should I be concerned?

I just can't decide.. should I at least consult my FP.. or my ENDO... or a 2nd RHE??? Or call this RHE back and say wait I want function tests and xrays 1st???

2

Brittany, I don't have RA but I have a different autoimmune disease that I take both Humira and MTX for. I am on Lantus and Humalog for diabetes, getting ready to start a pump next week. I have not had any adverse effects on my diabetes from taking the MTX - I take a fairly large dose of MTX for an autoimmune disease (25mg or 10 pills/week). MTX is hardest on the liver, that is what is of biggest concern. It is cumulative, meaning the more you have taken over your lifetime the higher the risks get. I have taken it for 10 years and I have not had any elevations in the liver function tests. I have my blood taken every 6 months for liver tests. I would suggest if you choose to begin MTX simply ask for the blood tests to be done as a baseline :) Good Luck!

3

Hi Brittany!

Welcome! I'm sorry to hear that you were dxd. with RA too. I was dxd. with severe RA 30+ years ago when I was 24. Can I actually say that I prefer Diabetes to RA? Sounds stupid, I know but true for me. I can control my sugar level for a good part of the time but I can't control RA when the medications don't work for me any more except for steroids which is frustrating.

Anyways, quite a few people with Type 1 and 2 have RA also. Some with mild, moderate or severe. If a person is predisposed to one autoimmune disease, there is a chance they will be dxd. with another or possibly more autoimmune diseases.

As far as liver and kidney tests, the blood tests that you had drawn before diagnosis will show also if you have liver or kidney problems, your RF and many other. Exrays are also done to see if you have any bone deterioration from RA.

You can tell your Drs. that you have RA if you want to and about the MTX. You don't need an appointment unless you want to have a full dicussion with them about it. Otherwise, a phone call will do and they can look at your test results on their computer, if you told your Rheumy(or Lab) to send the tests to them also.

MTX is one of the first medications (plus an anti-inflammatory and painkiller) to RA patients cuz it works well for most. Aggressive treatment is necessary from diagnosis in order to delay joint deterioration and to hopefully get them into remission for a while.

As far as I know, 98% of drugs can have bad side effects but they do not happen to most of the patients, just the minor side effects usually occur. They have to tell patients what is possible, so they won't get sued and so a patient can be taken off the drug if a patient gets a bad symptom.
Your blood will be tested every 6-8 weeks to make sure that you are doing okay on the medications also. I got tired of that routine after many years and told my Rheumy that I wanted them every 2-3 months instead since my tests were fine.

Any other questions, please ask. I hope that you get feeling better soon. There are some other TuD members with both diseases also including Rick from the Care Team. The Lad who writes great blogs and who makes me laugh when I need one. :)

4

Brittany:

I am so sorry to hear of you recent DX for RA. I often go to Terrie when I have concerns and questions and she has given you a detailed and wonderful answer to your post. I have had RA for 11 years diagnosed, likely undiagnosed for 5 more and type 1 for 39 years + a few months.

Ok so MXT is always or almost always the first line drug given to RA patients. I have taken it off and on for the last 11 years and have taken it constantly for the last 5 years. There are some alternatives but they are actually a little more harsh so while MXT is the older drug it is usually prescribed and fairly well tolerated. You will knwo if you do not tolerate it. But do give it some time. MXT is an immuno-suppressant so it may weaken your immune system a little more or less than needed until it gets dialed in.

Many doctors also prescribe Folic Acid with MXT. this blunts some of the negative side effects, but also some of the effectiveness. Yours may or may not for instance American doctors often do, European doctors almost never do. It is an individual thing. Pros and cons on both sides, I take the Folic Acid.

Now my advice, and this may run contrary to your current thinking, but it is the best advice i can possibly give. Find a Rhuematologist and do it starting Monday. It may take 3-5 months to find one and get in. But no one else in the medical profession is able to assist with the treatment plan like a Rheumatologist.

My Endo saw the indications of RA and sent me to one and I am very fortunate he did. But, while a regular doctor can prescribe MXT, it may not be in your best interest to see a doctor who does not fully understand the range of possible treatments.

Second you want to be aggressive, in your treatment. You have an option at this point you cna decide to ride it out with a PCF or get to a treatment specialist. The treatment specialist, a Rheumatologist, will know the level and type of drugs that are in the arsenal to help out. Generally despite yours and my natural reaction to trust our diabetic specialists, your health will move in large part to a Rheumatologist. Yes you will still see your endo or family doctor, but if cannot well you will not have good control over diabetes. In my experience the pecking order is Cardiac, Lung, Rheumatologist, Endo, Family doctor. Having said that your Rhuematologist will take precedence over diabetes and tha tis why in the order of things getting to one is very important. This will not be a committee decision, the Rheumatologist has access to specialized information that others do not have access too.

Finally, you can live with this. There are type 1's with RA, and we get along ok. Yes it is rough at times. Yes it does still hurt, yes it will mean more doctors, more appointments more of more. But it is doable.

Brittany, at various time i was nearly unable to walk, and each time the Rhuemy pulls me out. Terrie is a great person to cry too, I do often, and she helps me immensely. i hope sometimes i help her as well. But just like the wider diabetic community, we sort of form our own little support group so ask us anything, we dont bite. Well much.

Take care.

Rick

5

I agree with you Kristi. Diabetes and steroids are arch enemies. It is difficult to get blood sugars near to the good area even with the extra load of Insulin, especially with the high levels of steroids. You probably know that non-Diabetics on steroids for a longer term will become Diabetic.

I've been on steroids many times through the years. In April, I could barely walk again but I didn't want high levels of steroids to deal with on top of everything else, so my Rheumy put me on a moderate level instead.
I felt somewhat relieved about my bs test results on the moderate although I was hoping for better.

I'm back on low dose steroids again as the last 7+ years and I'm able to get the better results that I want as long as I keep on top of it. Low dose doesn't affect my blood sugars too much.

It is the bad side effects and the damage to so many parts of the body even on low dose, that is scary and frustrating to me and so many others.

6

Awe...thank you Rick. :) You've helped me more than you know. You're Top Notch!

Many Good comments in your post including the Folic Acid. I always forget that one.