TOPIC:

They haven't started anything yet. I am waiting to get into my Rheumatologist(Dec 13). But I do get to start retaking the Methyltrexate so at least I can start getting my Lupus back under some control. I have been in one very long Lupus flare since it was suspended for the EMG.(my platelets have been all over the place while going through this from 36K-149K.)

Any advice on how to get rid of or at least control the mouth sores? (I am also losing the mucosal lining in my mouth). I know these are associated with Lupus flares, so will this stop with the restart of the MTX?

Are they ulcers or more like canker sores? MTX may help that if it's caused by Lupus. Are you taking oral MTX or doing injections?

I'm supposed to start CellCept today. I swore that I would not do any more of the toxic drugs since I've been there done that enough times and they don't help. She talked me into it once again. I tried CellCept a few years ago but it didn't agree with me....trying again. Next she wants me to try Enbrel. The goal is to add steroid sparing meds to get the Prednisone dose down. She did admit though that I am probably one of few who only seems to be helped by Prednisone and we (she) might just have to learn to accept that.

I'm on oral MTX 17.5mg and they are thinking of putting me back on Cellcept as well. I took Cellcept(1000mg) for months and it worked well for me(except for the gastrointestinal issues). Enbrel I heard a lot of good things about, that's another one that they are considering for me as well because I tolerated Rituxan so well (I guess because they are both biologic drugs). Let me know how it goes. And I am one who will have to take steroids forever as well because every time they try to get me off(or at least lower the dose) my platelets drop fast.

As far as the sores they seem like a canker sores, they don't hurt(unless I bite them) they're just annoying. My hair is coming out in clumps as well. This all started popping up when they suspended the Lupus med for the EMG. So hopefully it goes away quickly!

I hope it goes away too. MTX can cause mouth sores and hair loss too.

I did not tolerate Rituxan well which is why I am afraid of Enbrel.

What dose of Prednisone are you on? Are you taking Plaquenil?

I take 200mg of Planquinil 2x daily, and I take 12mg of Medrol.(I was taking 40mg of Medrol but I was told that it's too toxic for very long) I will be going to 16mg or more. It was lowered due to the EMG study.

If you didn't tolerate Rituxan then I would do some serious question and answer sessions with the doctors before starting Enbrel. But from what I've read Enbrel is far less toxic than Rituxan so you may be able to tolerate it better. I hope you can tolerate it because from what I've read it is very good for autoimmune diseases.

As far as the mouth sores and hair loss it all started before I was diagnosed with Lupus it was just under control. When all the Lupus meds were suspended it all came back with a vengeance.

I had serum sickness from Rituxan twice (was misdiagnosed the first time). Having the reaction again could cause anaphylaxis and death. It doesn't occur during the infusions...it's weeks later when you're at home. My Rheumatologist is aware of it and we discussed the possibility. The biologics scare me for that reason. I'm also not in the mood for giving myself injections again when no drug I've ever tried does any good and only causes more problems. I'm really out to lunch on that one.

Just be sure to take your folic acid with MTX. Hopefully the mouth sores will clear up.

Autoimmune diseases are the worst, because what works great for one almost kills someone else. It must drive the doctors crazy. I know I've just about driven mine to the Looney bin!

Dan
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Lets hope the worst is behind you now! Take and stay in touch!

Jeff

I hope so too! And will definitely keep in touch, this forum sometimes is one of the few things that keeps me at least partially from going bonkers!

Thanks

I wish this Forum kept me from going bonkers! Usually causes me to go bonkers!

Sandi wrote:

I wish this Forum kept me from going bonkers! Usually causes me to go bonkers!

Yeah, I have that effect on small and large groups....... Just a gift I guess!

DanC33 wrote:

I hope so too! And will definitely keep in touch, this forum sometimes is one of the few things that keeps me at least partially from going bonkers!

Thanks

Dan, I could not agree more. I really don't know what I would have done without this site. It calmed my greatest fear, fear of the unknown.

Rest up and heal up!

Jeff

Thanks Jeff! Sandi it's because your busy answering questions and being an EXCELLANT source of support. And it helps that we are all bonkers, why would we want to face all this stuff and be normal?

Ha, I try. I'm not as patient as I could be at times. Too self-admittedly cranky!

Another episode of as the steroids turn.

Hi Dan!

Sorry to hear that. How are you doing overall? Feeling better I hope and at least a little more confident that you are starting to turn a corner.

I hope you had a great Thanksgiving!

Jeff

Just got in from the Rheumatologist, and some good news! He said that I do not have Dermatomyositis The NCS showed that I do have neuropathy in my hands my legs checked out OK but he said that all the weakness/numbness in my legs is from Dystonia because of my Parkinson's. He said that my Lupus seems to be in check right now. He did say that my protein count after a 24hr urine test was a little high so he suspended the MTX and lowered the Medrol to 12mg and wants to do another 24hr urine test in 1 month. If it is still high then he said that he is going to restart the Cellcept instead of the MTX . He says that MTX is too toxic over the long term. I know it's not earth shattering but I'll take any good news I can get!

That is good news! One less diagnosis is a big deal!

Does he think the neuropathy is due to Lupus? Mine has been horrible lately because of the cold weather. My feet have been almost completely numb, but feel ice cold and painful at the same time. I can't stand this weather...I get very stiff muscles and joints. Trying to shop is impossible because I can't carry things or walk very far. Just walking through the parking lot is exhausting. Internet (as much as possible)!

MTX is toxic over time and I wish I'd never used it. I'm on CellCept now, only 200 mg's. I was supposed to bump it up to 400 two weeks ago, but just can't stand the thought of the side effects.

Is there any way to treat Parkinson's?

Dan,

Hey! One good thing is exactly that one good thing! Yeaaa for you! Stay in touch and keep me posted on what is going on and how you are doing.

Sandi, that has got to be tough. Sorry.

Jeff

The neuropathy in my hands/arms is from Lupus and they also said that I so have signs of carpel tunnel as well. The neuropathy and weakness in my legs is from Parkinson's it's actually called dystonia it is the brain not processing signals due to dopamine levels being off( it also is the reason for the tremor that Parkinson's patients have). The treatment is taking a drug called Sinemet 25/100. It's a levodopa drug that increases the amount of dopamine in the brain which in turn controls these problems. It has to be taken at various times of the day based on the on/off nature of this drug. I have went from taking 3 then 4 and now 5 of these a day. But I do feel much better! The problem with this is that long term you end up taking more and more till it no longer works and you end up with a whole host of other issues. It is featured in a movie with Robin Williams and Robert DeNiro called Awakenings. Like Lupus there is no cure and it is progressive so it only gets worse.

The weather is getting to me as well. We have several inches of snow here in Northern Nevada and our high temps have been like 20 lows below 0. It really hurts my joints making things much harder to do. I am thinking Maui sounds real nice right now!! But on that note does the weather(humidity, elevation, cold ect..)have any affects on Lupus? Because things like freezing temps never bothered me before, now things like real cold or hot weather really bothers me.

I had Cubital Tunnel a few years ago. It's the same as Carpal Tunnel, just affects a different nerve in the arm. It was due to nerve inflammation which caused nerve entrapment. I found some exercises online and between doing those and taking anti-inflammatories, it went away. I still do get numbness and tingling in arms and fingers when exposed to either heat or cold.

I've seen the movie Awakenings. I hope that if it does progress, it is very slow. I'm sorry you have to deal with that on top of Lupus.

The weather affects me a lot, both hot and cold. I do better in the summer, but if I am in the sun, I get instant pins and needles in arms and legs that feel like bee stings. In the winter, I am the Tin Man. Moving is difficult, so I have to try to stay warm. By the end of the day, I am so glad to crawl in bed with the electric blanket. It's the only thing that relieves the stiffness. It's amazing how much the weather affects people with Lupus, even rainy days are hard to deal with.

I hope the progression is very slow, on both diseases. They say that you die with Parkinson's not from it. It's just very debilitating.
I was on the Lupus Foundation and a few other autoimmune disease websites and they all have a thread on weather and Lupus/autoimmunes. It seems like everyone has issues with extremes in the weather. The only ones not complaining much were in states like California and Florida where the weather is usually stable. The ones with the most complaints were in areas with huge weather changes. Like where I am. Here we get 360 days of sun but it can be 110+ in the summer to -0 in the winter with heavy snow(I'm 15 min from Tahoe so high elevation). I also forgot to mention the Doc said I have Raynaud's as well.(he said that's very common with Lupus any thoughts?) So the cold really hurts and my fingers turn blue, but in the sun I get all blotchy and the pins and needles you mentioned. So I am covered head to toe all year long. People look at me like I'm an idiot in the summer but it's better than being a shut in. So whenever my SSDI case is won, we are thinking of moving to somewhere that doesn't have the huge swings in weather. I like the area here because it's beautiful but for me it's painful.(If you want a good vacation spot look up Gardnerville NV.) What's funny is all the doctors on these sites are saying that there is no correlation between weather and autoimmune flares. I think we know better. Maybe we should start a thread hear and see what others are saying?

There aren't many people here with Lupus, so we wouldn't get many responses. You could try.

I saw my Rheumatologist a few weeks ago and she asked how I was doing. I told her that since the weather changed, I've been awful. She said that she's been hearing that from a lot of patients. You'd think if they keep hearing it over and over, they would start to believe it. I think my doctor does.

Raynauds is common with Lupus. I don't think I have it. I have problems with hands and feet, but they don't turn white or blue when exposed to cold. You just have to keep covered if you go out. If Raynauds gets really bad, it can cause ulceration on fingers and toes.

Yeah, other than moving, I don't have any solutions. I basically hibernate all winter. I had to go to a wedding yesterday and the venue was drafty. I was miserable the entire time and couldn't wait to get home to my electric blanket.

You have had so much to deal with lately, how are you doing emotionally?

Emotionally, it's been rough(horrible even). I have always been the tough guy.I used to climb wind turbines of 90-200ft, played football and even played 2 innings of baseball with a broken leg! Now it's seems like I have problems doing even the most basic of tasks without help. And the adjustment to knowing I will probably never be able to go back to work(I have worked steadily since 1981 when I was only 13)has been very hard.(on my wife too she's not used to me being home all the time) I have never had to rely on any kind of social safety nets and now if it wasn't for things like Medicaid I couldn't take care of my family. But in spite of it all I will continue to press forward. And if it wasn't for my dear wife of 22 years,I think I would be in a padded room wearing one of those nice jackets that tie in the back babbling to myself without her. And as I have said before that this forum, being able reach out to people like you Sandi(And Jeffery and too many to mention) has been just what I need sometimes to kick me in the fanny when I start getting wrapped up in myself knowing that there are people that are dealing with way worse than me.

I've got a much milder case but I do have a strong sun sensitivity and I have to be covered up if I'll be getting more than 2 minutes or so of sun (despite spf40+.) So I wear long gloves, a big hat, and sometimes a scarf. Always long sleeves and long pants. Even on my new work project in Hawaii. I feel self conscious but I don't think people really stare that much, it's more in my head. Nobody has ever said anything. Now and then I see other people covered up. It's either wear my gear or stay inside and I don't want to stay inside. I'll go to a beach very early in the morning, or just before sunset. I found some great beige colored long cotton gloves on amazon and I always have a pair with me. Also I leave a pair in my car. I celebrate gray days when I can stay out a little longer with a little less gear.

So I guess I'm saying that for the sun sensitive part, there are some strategies that can make it easier and to try not to worry about what other people are thinking. I've got some canned (friendly and not so friendly) replies in my head for what to say if anyone makes a comment but I've never had to use them, so I guess I've wasted a certain amount of mental energy and stress on a problem that hasn't happened yet.
Erica

I am just getting used to all this, so when I get those stares because it's 105 and I'm in long sleeves, long pants, a hat wearing spf 40 and dark sun glasses.(and still getting rashes) It's just odd to me but I'm going to have to get used to it and deal with it as best I can. What are the "canned replies"? Maybe I'll use them!

Dan:


I can only imagine what you're going through. Losing so much of yourself has to be tough. Your disorders have all occurred fairly fast and piled up. I wouldn't be surprised if you had a few meltdowns; a person can only take so much. You do seem strong and determined to make the best of it...you're a remarkable person. Remember though that it's okay to feel bad and have a few pity parties. That's normal. No one can be brave all the time.

I have lost the ability to do things slowly. Sometimes I don't even realize that I can't do something any more until one day I go to do it and can't. Example - snapping my fingers. I found out a few weeks ago that I can't do that any more. It wasn't earth shattering, but I thought, oh man! One more thing! Last night at the wedding I was watching everyone drinking and dancing and I can't do either of those. I miss it and I did have a slight meltdown in the car. Just a few years ago I was one of the crowd and last night there were people 15 years older than me out there shaking it around. My mind is willing but the body isn't. You're right though, there are people who have it worse and I do keep that in mind.

I'm glad that your wife is supportive. Things like this can take a toll on relationships. Sometimes I'm not sure which person has it the hardest, the person that is ill or the one who is not. It sure does test those wedding vows.

Dan,

Good to hear from you! I can support the weather thing. I have RA with the ITP. It hurts, especially in cold weather. And, I cannot get warm. I am cold all the time. Occasionally my finger tips turn a little bluish white. You have been through far more than me. I empathize with what you have lost physically. I do understand. I was extremely active before all this hit me. Martial arts, triathlon, marathons, any adventure that there was! Oh well! I am getting old too and that does not help either! LOL

Addressing a little of the mental aspect, again from my no where near what you, Sandi and others have been through, it is just flat uncalled for not to be able to do what we used to be able to do. If I hear another "you don't look sick" I might scream! Not really, I am glad I don't look sick but I don't want any of us to be sick. It has been hard for me to realize that I just cant fix everything. I have learned that lesson. A hard lesson, but I have learned it. I don't know if anyone except those that are on the same journey will ever understand what we go through.

It is taxing on those around us, but I guarantee it is more taxing on us! Every step I take, every mile I run, every pedal I turn on the bike, hurts. And it hurts more every week. I keep doing it because that is just what I do. The end of my training may be close at hand. I will just deal with it as I can and look to you and all of the others for inspiration!

You Dan, I think, are doing wonderful! Hang in there!

Jeff

Dan I am inspired by how you are handling everything.

Jeffery, I get that all the time as well. "You look great or you don't look sick". I'm glad that I don't look sick, fortunately most of us don't. And I'm very happy that you can still do some of the things you like to do in spite of what' going on. JUST KEEP IT UP!! for as long as you physically can. And as far as the mental parts it doesn't really matter to me if it's a little or a lot we ALL deal with things, so I feel we must keep each other going because as Sandi mentioned earlier there are so few of us.

Sandi, I can relate to what you are saying. I can no longer do a lot of things. Like tonight I went to pick up a small box it only weighed about 25llbs but I dropped it, nothing broke but it's still made me very angry. I am now having to rely on my 17 year old son to do things like that for me. Heck I can hardly open a jar without help!. As far as meltdowns my wife has had a few, but I don't think everything has set in yet for me. My PCP wants me to start seeing a Psychiatrist because even she cries when I go see her.(as does the Lab Tech I see every 3 weeks) She can't believe that I'm still fighting her and my other Doctors to go back to some kind of work. Last time she said that she was 90% thrilled that I haven't given up and 10% wants to slap me. (I have had the same PCP for 10 years so she is very comfortable with me) The biggest thing for me that I still do even though it hurts is play my guitars, I can only play for 1/2-1 hour but I still do and I will continue to do so until my hands no longer work. And another thing that helps is my friends they try to include me as often as they can. And somehow I've become all my friends IT department, they bring me their computers, tablets and cell phones every time they need fixed or get a virus. It's weird but I guess it gives me something to do.

I have trouble with jars too, and can't lift much. I also drop things all the time. I went shopping for a wedding gift last week and couldn't hold the two boxes I had long enough to stand in line. There was no where to put it down, so some nice lady moved things on a display table. I barely got back to the car. It is frustrating.

It's nice that your friends bring you work...keeping busy does help and makes you feel productive. I also need that in my life so I always have some project going. It might take four months, but I do the best I can. Weak muscles are the pits....it really limits what you can do. I think it's the result of years of neuropathy and years of Prednisone.

Hang in there. One day at a time...