Places for folks with rheumatology issues, what goes, right, wrong or indifferent.
I got Juvenile Arthritis at about 13 y.o. I've been in remission since I was about 40 y.o., but in the long run it has given me many more problems than Diabetes ever has. I remember sitting in my doctor's office at 13 y.o., hoping for some sort of diagnosis for my swollen legs. He pulled down a medical book on Rheumatism, looked at it a while, and never did come up with a diagnosis. I was just put to bed, no meds, for months at a time. The Dark Ages for the disease! I can write lots more, but I'll stop for now...
Trudy that is wonderful that you are in remission. I heard stories of people going into remission, but I have yet to experience it. Mine hasn't even slowed down, it's been active for 17+ years.
I am so glad that Rick was able to add us to the multiple conditions group. My mom's side of the family diabetes first then osteoarthritis later in life; whereas, my paternal grandmother had severe RA early in life and then diabetes. But I didn't get a chance to talk with her about her experiences because she passed when I was young--mostly I just know from my parents. My dad said she was housebound a lot due to her RA.
It's going to be an experience for me to already deal with my RA (the wild child) and thyroid (which I have under control) and now diabetes.
Hi Rick!! Thank you for the invite.
My 2 Brothers and I were dxd. with Diabetes at ages 4 and 3. My Family knew of no one else in our Family that had Diabetes. If there was, then Diabetes skipped generations.
When I was in my early 20's I was dxd. with severe RA. This disease is on both sides of my Family. Moreso, on my Dad's side. Except for the 1-3 years of remission here and there thanks to medications, the rest of the 31+ years were mostly severe pain and fatigue. I had a Very "close experience" one night when I was at my Very lowest.
With help from homemakers and Friends a few times a week(they were a godsend), I was able to raise our Kids and doggie while my Hubby worked at his job, then he usually helped me out after work and on the week-ends.
I have been flaring for the last 9 years and there are no drugs that work for me now. My A1c's have mainly been between 5.3 - 6.8 for about the last ten years except for the past 1 1/2 years. I have had Osteoarthritis for about 8 years and other conditions. That's it for now.
I feel Really bad for you getting JRA as a Child Trudy. It must have been horrid. When were you actually dxd. with RA? I envy you being in remission for so long. That's awesome!! "but in the long run it has given me many more problems than Diabetes ever has". I agree Trudy, me to. :(
Wow, that's a long time to be flaring Kate. Poor you! Hoping that you find remission soon and reaching in-range success with all of your conditions.
Meanwhile, we would be Happy to help others with RA, from our combined knowledge and experiences(including Rick :) ).
I was DX'd with type 1 in 1974. I was 17 and as I have written many times my mom also had type 1 so it was not unexpected. My life was reasonably normal I certainly had fears concerns and setbacks along the way, but I was able to love and work and have a pretty good life.
In about 1994 I started to have significant pain in my back I figured, I was getting old and no real need to get upset. In 1997 I started with a new Endo who was approachable. I was working and plugging away but over time I started being more tired and I had much more pain. It was tough.
In 1998 – 1999 (I think in terms of school years) two events happened that I will never forget. The first occurred in the fall. My oldest son came home with a magnificent 1999 Trans AM. It was silver and just beautiful, I was so proud of my son where he was in his life and I was so excited about where he was going with his career. When he brought the car home he asked his mom and I to go for a ride. I could not bring myself to try and get in the car. The thought of folding myself to get into that car that was so tight and so low to the ground was just abhorrent. I just could not physically do it. My son was upset with me and seeing him think I had snubbed him and his joy over that car was so awful.
In the spring I took my young son to visit Indiana University (IU). The campus is about an hour away from our house and on the way I had to stop and get out of the car to stretch I hurt so badly. Typically I would have been able to drive 3 hours. But on that day I was unable to go even one half hour.
When we arrived at IU they had the normal parent / student walking tour. My son went, I stayed behind. I love IU, and I love Bloomington Indiana in the late winter. It is a magnificent campus and when I thought of places my son might attend, I could only hope he would choose IU Bloomington (IUB). My family has history with IUB. My mom was offered a full four year fully paid scholarship to attend and because of her finances she turned down the IUB part and instead attended a local IU campus in Kokomo (IUK). When I decided to go to school my grades were not good enough to go to IUB so I also went to IUK and I graduated from Indiana University Purdue University Indianapolis (IUPUI). Still it was not IUB. In a way it was doubtful my family would be able to get a chance to go to IUB. Then my youngest son had that chance. I so wanted him to go there and be successful. Yet I was unable to do the walking tour.
My youngest did choose to go to IUB and he was very successful. But given those two events I knew something was terribly wrong. When I saw my Endo next I told him I was hurting constantly and I had no energy. He agreed to do some tests and I didn’t hear a thing from them until my next appointment 3 months later.
At that appointment we talked about diabetes, I was doing ok, and he said oh by the way these are results from the extra blood work I did. It showed my Rheumatoid Factor was off the chart. It was 5 times the normal level. I was referred to a Rheumatologist who went immediately to methotrexate and then to Remicade. I was fortunate he went immediately to biologics it probably saved my ability to keep working.
Over the years I have been on 6 different biologic drugs. Currently I use Rituxan. It is really my last ditch drug. It has been good so far. I still have all the underlying issues but at least I am not getting worse as I was prior to using Rituxan. I am on the most aggressive Rituxan treatment, I am infused every 4 months and I as I say I still have underlying issues, including joint paint and tiredness.
RA has been way more difficult than type 1 diabetes. People really do not understand how debilitating this disease is. When I was DX’s with type 1 I thought I had the worst disease possible. It was not even close. RA is much worse. I had to stop working in 2008 since I could no longer do the tasks I was assigned. When that happened I felt I lost everything. Of course over time it has gotten better. But still I so miss my work. It is just no longer possible to do that or really any work. If I could I would go back in a heartbeat.
Trudy I admire a person who has lived with this as long as you have. I can only imagine the difficulty especially before biologic drugs. Of course I am excited to help others.
I wonder what, if any, treatments are we using these days? As I said I am using Rituxan. Over the years I have also used Remicade, Simponi, Actemra, Orencia, and Cimzia. What is working for others?
There is an article in today's Huffington Post describing a medical device the size of a pea that stops the pain from arthritic inflammation. That's real news!
Thanks, Kate, Terrie and Rick for the kind remarks. I feel really lucky to be in remission; some of my descendents have different forms of active arthritis and are taking current medications. My darn autoimmune genes. Arthritis is aa terrible disease; I hope that the device I referenced above, described in the Huffington Post, will soon become available to all of us in arthritic pain.
I've just finished physical therapy for my displaced shoulder, injured on October 17, 2013. This great modern PT reminded me of PT when I had my first episode with Juv. RA--I started using my hands by doing jigsaw puzzles and walking up and down next to my bed, holding onto it for dear life. Starting in the 7th grade, I started taking typing lessons in school using gigantic typewrites that required a lot of strength to just hit the keys. Hard work for me, but it helped! I was instructed in those early years not to walk, just stay in bed, but of course I sneaked out, met my friends and walked. Good thing! It must have been the right therapy because at 83 y.o., I still walk and type, although with a little difficulty. Aspirin would have been nice back then, but nobody I knew gave any thought to medication then.
Has anyone developed terrible mouth sores while using methotrexate? A few weeks ago my mouth started hurting like nothing I can remember. So I got to the dentist and he said I had open sores on top of open sores. I started using compounded mouth wash that the dentist prescribed and over a few days the pain subsided. It took about 15 days to knock it back.
I have stopped using methotrexate until I see the Rhummy in a couple of weeks. I am continuing the Folic Acid which is supposedly used to mute the ill effects of the methotrexate.
This is not the first time methotrexate has caused mouth sores for me. I had them once before and had to stop using it. This was far more severe. I wonder if anyone else has had a similar response?
Thank you Eucritta for your post. I am sorry I did not get a note to you when I started this little group. I do recall now that over the years sometime you told me you have RA. when you posted I was like DUH !!. LOL
Anyway welcome and feel free to post and let us know how things are going. I have had really good luck with Rituxan but cannot go back to the TNF inhibitors because of the lupus like response my immune system provided. So right now Rituxan is pretty much my last stop. I am sure other stuff will come along.
At any rate, again welcome.
LOL That might be a blessing according to my wife? I am teasing she only wants me to be quiet when I talk. LOL
I had mouth sores a few years ago and went to Arava. Wow that really caused mouth sores. So I stopped all the supplemental therapy until about a year ago when my doctor suggested I try it again and I did, successfully. In January I asked to try injectable methotrexate and it worked for about 2 months, then the mouth sores came harder than I have ever had in years. Wow. it was a mess.
The compound the dentist gave me is used for cancer patients who cannot stop treatment but who develop significant mouth sores. It did work if anyone wants to know the name, but it is a prescription compound.
Hey Rick, my big side effect with Methotrexate was queasiness so I always had my shot night on a Friday night for Methotrexate and Humira.
Methotrexate helped a little with the RA but my liver labs were abnormal, so I ended up upping Humira to once a week. I've been on everything but Rituxan. I started on Celebrex, Vioxx was good but made me think I was losing all my teeth--major teeth pain. Arava didn't agree with me and didn't help; Symponi and Cimiza was a waste of time as was Enbrel.
Orencia worked for a while but then "burned out". Actemra actually made my RA and immune system worse. Then my rheumy decide to put me on Remicade once a month but without Methotrexate; instead, he gives me a steroid shot in my line before my infusion. So far it's helping but my labs (CPR, Sed Rates, WBC) are still abnormal but way better than they were before.
But with the aggressive treatment for the RA, the side effect is now I'm dealing with diabetes. The last time I saw my endo he was confused since I'm following his orders of losing weight, eating a low carb diet, being active, but my A1C is not budging, reducing my prednisone dosage as much as I can take, and my inflammation is increasing. He said of the two battles--RA is worse and should be controlled first which would automatically help the diabetes.
But as we all know RA has a mind of its own--no matter what you do, if "Uncle Arthur" doesn't want to cooperate, he doesn't.
You know I am also Type 1 so I deal with the hammer of both. bring one under control, lose the other. Lose one lose the other. I mean lets face it they seem to correspond.
My issue with TNF inhibitors was the medically induced Lupus. Wow I tell you that was the worst thing of all. Anyway I cannot go back there. I dont know what tripped that trigger but I swear it was so bad. I was lucky to get to a hospital that had the policy of admitting Flu patients. Otherwise I would have died.
Anyway ancient history, I did really like rmeicaide but when it stopped working the bottom fell out. It was sudden and severe . None of the rest until Rituxan even came close.
That's the battle I'm in now between my rheumy and my endo--my rheumy thinks that I am probably LADA and it just hasn't shown up since I have been "collecting" AI diseases as the years go by. My endo thinks I am Type 2 due the prednisone and also my family history even though most of my mom's family is Type 2 insulin dependent out of the gate--pills either don't work or have adverse affect on their systems. Very strange. My maternal grandfather had a history of DKA.
But at my last appointment in early May my endo kind of backtracked and seemed concerned that my A1C wasn't going down but my weight was and my inflammation was going up due to my RA. If my rheumy and endo had been betting men they would have lost their life savings on thinking that my RA would do better with me losing weight. Again, 'Uncle Arthur' has a mind of his own. So now he wants to do a wait and see approach and think about insulin.
Meanwhile, my rheumy is up in arms because my potassium is dropping like crazy and he can't figure out why even though I'm taking potassium pills the size of horse tranquilizers and eating as much potassium rich foods as I can find. Again goes back to AI--there is a connection between low potassium, RA, and diabetes in some people--rare, but it's there. Especially those suffering from DKA, but I'm not.
Third, when I check my sugars I'm always in range, but my A1C shows 6.4 - 6.7 which I guess is due to my monthly predisone shot with my Remicade IV and my daily 5mg dose of prednisone (that I gradually reduced from 20 mg a day) over the course of a year. But the docs are assuming that I'm spiking somewhere along the day or night and then falling back into alignment when I check. When I see my endo I'm going to ask him if I need a CGMS because I do have hypos at least once a day, but I don't have a huge rebound. Go figure.
Rick, I know that wasn't fun. My rheumy's tested me several times for medically induced Lupus, and thankfully the tests haven't always come back negative. But I've heard it is a bear.
When my body rejected Actemra, I was miserable--full body swelling. I went from a size 8 to a size 10 shoe. The rheumy decided to place me on Remicade instead of Rituxan because he said he didn't know how my body might react. I do Remicade every 4 weeks, but it plays out by the 3rd week, so the last week until my next dose I'm running on residual fumes (pain, swelling, aching, restless sleep).
Brain fog, fuzzy brain. That's how I felt on Actemra.
Wow Eucritta, we could be twins--exact same MO. I take Vitamin D3 every day, Potassium 2x a day, high CPR, high Sed Rate, high WBC, low potassium.
I drink water like it's going out of style, no appetite, and thankfully at work my office is near the bathroom. Sometimes I have to make double trips--in/out and then a turnaround. :-)
The highest I've been is in the endo office the first time I saw him diagnosed as a diabetic--268. Previously I had seen him because I was hypoglycemic--dropping into the 40s while sitting at my desk at work.
I think the reason I'm able to keep my BG in control is because I've given up all starches. Before then, I was trying to cut back, but I was "losing time"--nodding at work for 15 minutes and not even knowing it. Now I don't have those episodes as much.
Oh yes, peripheral neuropathy too from my RA--I'm on Topramax. The Lyrica was killing me--making it worse, but the Topramax helps me a lot and I'm not having the numbing pain in my feet and hands. And not as many plantar fasciitis flares (in both feet) either.
I think I'll be like my Mom. Her dad (my granddad) kept telling her that she was diabetic, but every time she went for a blood test it came back negative. Then after he passed, I think the grief (she was very close to him) caused the diabetes to show up and within 3 months she had a very bad episode--her BG shot up to 300+ and she was in a fog. Dad and I rushed her to the doctor and he diagnosed her on the spot just from her breath--extremely sweet. The rest is history.
I am classified as hypertensive but I was borderline for quite years. After the radioactive iodine for my Graves disease at 14 (doc didn't know the dosage to give me I was so young--ended up with 2)--I take meds for palipitations. It's strange that I have great cholesterol levels (yay, something's working right!).
I am really slow to heal, even as a child, even compared to my diabetic relatives, that's the reason they are all so worried about me.
Just had lunch and I'm doing my usual sweating routine. Mom thought it was "the change" but said it was too early, now I think it's the 'betes.
So how did the docs finally pin point you, did you have a big episode (sickness) or finally they ran a test and found you positive for Type 1.
Kate, that is the way I was at the end of my remicaide. Oh and actermera crapped out in less than 6 months. Yuck But yes I was down to once a month remicaide and then it was like taking water just no effect. I was in heck of a mess for awhile.
Kate when I had that medically induced Lupus I got up in the night and i was typing on the computer, playing solitaire. Anyway my right hand started to hurt and of course being a male I did what males do, I put the mouse in my left hand. When my left arm started to hurt I thought well ok, I will go back to bed. I mean I am a man, and going to bed makes everything go away, Right? Well I stood up and started to walk and I started jerking like an epileptic and I was very cold.
So I got a blanket and went back to bad (I am a man you might remember). When I arrived I told my wife I was feeling awful. She said what, I told her and she rolled over. In a few minutes the bed was shaking so hard neither of us could avoid the fact that something was terribly wrong.
So we went to the ER. When we got there my temp was 103 and I could not be touched. I could not even hold my pump, my hand felt so bad. When they got me admitted no one and no thing could touch me. Even the blankets hurts.
It took massive doses of steroids and Antibiotics but in a few days (about 3) the symptoms subsided. The GM doctors wanted it to be flu, the Rhummy medical lupus. I just wanted to go home. I was in the facility for 5 days and was fortunate. Had I stumbled into most other ER's (not connected to my Rhummy) I might have never recovered. I know I wanted to die, wow, forget that going back to bed stuff. Now when I feel bad, I get in the recliner. LOL
Goodness! That sounds terrifying and I'm sure it was for you. All the AI diseases, disorders, conditions, whatever you want to call them are like diabetes--only a few people have the knowledge to treat them. We the patients are at the mercy of those that don't know and we have to be diligent in knowng everything there is to know about our disease, our meds, and everything else.
What's so funny to me is that you hear people giving you tips on how to "cure" Diabetes and RA but you never hear them trying to give tips to cure Lupus or Sarcoidosis, it's just weird in my opinion.