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Hi everyone,
I'm looking for counsel from other's experience on what to expect with these drugs and what I need to be watchful about.
Dr. F. has decided to start me on Prednizone 40 mg/da, and hopes to wean me off, he says, in three to six months.
Also, Cellcept, 500 mg/2X day. He says I need to be mindful of infection. I'm really not clued into what can happen, so can someone spell it out for me? I'm looking at years on this, he says.
I will also be starting IV Clindy, 7 days on, 2-3 weeks off. I had some trouble with tablets, has anyone else had trouble with Clindy and how did you deal with it? I want to make this work.
This is all new and scary. I'm haven't been a med taking girl at all in my life, and these worry me, but I'm more worried that I won't get well if I don't make them work.
Thoughts, jokes, prayers?
Thanks…
Margaret
Margaret,
when Dr.F. said to be mindful of infections he really means it since Cellcept is an immun suppressant. I guess he wants your lungs to get better. I have taken Cellcept and prednison and ended up with very bad sinus infection. I know he is also starting you on clindy, so I hope that will help not to get an infections. Just keep away from people with colds.
it's good he will get you off the Prednison within a short period of time. Watch your weight, Prednison made me soooooo hungry I could have ate a bear:). Sometimes it is hard to get off Prednison, so hopefully he will have you get down to a small amount soon.
Yes, it is true the antibiotics take time to get rid of the bugs in your system. I have been only on Mino and Biaxin for the last 26 months, I also started LDN for the muscle weakness which has helped a lot.
Take care.
Eva:D
Eva Holloway
Eva,
I don't have any lung issues. He says it is because my blood work for inflammation is so high. It has bounced from 1013, to 750 to 720 (3/12), to 835 (3/25) and he is concerned that my muscles are going to be irreversibly harmed. The idea is to stop the cycle of inflammation and deterioration, but at what cost? Which is worse? The risk of my deteriorating muscles or the possible leukpenia from the cellcept? Does cellcept permanently suppress your immune system? Is there a higher risk the longer you take it? What is the tipping point?
I've got a bazillion questions.
Margaret
Margaret:
This is surprising news. Can you tell us more about why Dr. F is recommending this course of treatment? Did you have PFTs or a CT of the lungs that indicated fibrosis? What is going on that would cause him to make this recommendation?
If it were me, knowing what I know from the experience of so many other SD patients on this forum, I would insist on an Igenex lyme test prior to beginning the immunosuppressants such as pred and cellcept.
Cheryl
Bless you for replying Cheryl!
No, I don't have any lung involvement. This is strictly based on high inflammation which he is concerned is an indication that my muscles are getting eaten up. I reminded him that I DO have muscular dystrophy — so I kind of think this is to be expected. On the other hand, is it really NOt muscular dystrophy, but related to the autoimmune fun?
My gut is telling me not to start the meds tomorrow (I'm supposed to pick them up and start them) and hold off until I can ask Dr.F. if we can do an Igenex. I happen to have a kit I just received for Brian that I could use for myself, if he'd sign off, and I could have the draw Monday a.m.
I'm trying to figure this out and I like that you are thinking of an Igenex test, too. I can not think of a time when I have ever had a tick bite, but stranger things have happened. We've camped a lot up at Little Grass Valley Lake. It's possible I was and didn't know it. I was struck by one of Kim's comments about the 'lyme neck crack' my neck does that, is it a symtom, and are there other things that are symptoms that I just don't recognize as such? I'm wondering if I can actually make a case for a lyme test.
I feel so good right now. I just wasn't expecting the cellcept. I got used to the prednizone idea, but really don't like the cellcept — the leukpenia, and the fact that Brian and Daniel bring home a new virus every week. I'll never survive in this environment!
Margaret
Margaret,
I responded to your PM, but definitely I would do the Igenex test a.s.a.p. and hold off on the other stuff until you get those results.
What are you doing now for inflammation? Sauna? Enzymes?
Take care…..kim
Hi Margaret! I agree with the rest of the group. Get a Lyme test first! As for the meds you will be starting. My cousin has a muscle disease and is on cellcept…she has responded very well and also did the prednisone with it and has now successfully weened off of it. She is also doing IVIG which has been a huge part in quieting her disease. She was unable to walk due to mytosis (spelling?) Now she is able to walk, work out, and ride horses again! She was very conscious about staying away from people with colds, no hugs, no kisses, and definitely no hospitals….and she did fine! As for the prednisone. I have been taking it since july ..Im on a much lower dose. I have not put on any weight…in fact I lost….but many people put on weight and I did last year when i was on 20mg. Be careful with what you eat. I did a very low sodium diet, lots of water, and PORTION CONTROL, and no caffeine. Since I did all of that I managed my weight….which psychologically helped me manage the mood swings as well.
Margaret,
no, it does not permanently supress your system, just for the time you use it, it is used for people that have transplants in actuallity. But, I did take Cellcept for about 15 months and I still had the muscle issue, I have Dermatomyositis. The Cellcept washes out of your system after a period of time. Hopefully he will only keep you on for a very short period. I took 3000mg a day, plus Prednison and Enbrel. Not a good combo.
I was given Cellcept for lung issue. I guess SD has lung issues too, I can't understand why Prednison and Cellcept.
Take care,
Eva:D
Eva Holloway
Margaret,
High dose prednisone never helped my husband's muscles. It definitely did give him pneumonia though. Also, the 5 months of Cytoxan Dr F wanted him to take never helped with the lungs or muscles. I know you have a history of muscular dystophy but do you have a positive EMG or muscle biopsy for myositis? If you do or can get one, you could qualify for IVIG which can really help with your muscles. Many of the myositis people here also seem to be getting benefit from low dose naltrexone. I think these are all valid options you should consider before taking Cellcept and prednisone.
My husband's myositis we believe was caused by babesia. Regular antibiotics will not work for babesia as it is a pyroplasm and antimalarials are needed.
Margaret wrote:
I will also be starting IV Clindy, 7 days on, 2-3 weeks off. I had some trouble with tablets, has anyone else had trouble with Clindy and how did you deal with it? I want to make this work.
I cannot take clindamycin orally, because it caused gastro-upset, but have not had any issues with IV clindamycin. I'm on my fifth or sixth round of IV's, every three weeks. I've had nothing but positive results and hope you will too….:)
nancy
Wow!! This is an avalanche of great advice from all of you!!!!!!
This is where I've decided to go. I have an Igenex kit at home which I ordered and received last week for my son. (Sorry, mom is going to use it, we'll get you another one) I'm going to get tested for lyme which I think is definitely a question which must be answered before I move forward with anything immunosuppressive.
I'll keep you posted when I find out the results, which should be two or three weeks.
The depth of knowledge and wisdom of each of you, and I'm including the unseen support of Kim, Maz and Maria in this, is remarkable. We, as a community, are so fortunate to have you each standing beside us in times of ignorance and indecision, because you are enabling us to ask the right questions, consider options, forestall mistakes, take action, and ensure our healthy goals. I am grateful.
God Bless. Kali anastasi!
Parisa,
Thank you for your knowledge. I have had a hunch, and you (Kim, Maria, Cheryl and Maz) have helped crystallize it. I have thought for a long time that my doctor might be wrong about the MD. I definitely have the genetic marker for it, but it came on at the same time as my other SD symptoms and the neck weakness (Kim attributes her neck issues to babesia, too.) So, here I am wondering if lyme, babesia and other bugs, aren't co-culprits in my symptoms.
I had an EMG a year ago. The result was that I have no nerve responses in my neck at all. The neurologist said they were completely gone. For fourteen months, I've been at physical therapy, and, until I took seven days worth of clindamycin in February, I had not been able to restore my ligaments or neck muscles. Then, in February, they all came back. They were so strong within a week that my physical therapist was aghast at the progress since the exam two weeks before. She said I'm not even having to concentrate to get them to move, and they are strong. They're not just strong, I can hold my head up.
Unfortunately, the clindamycin did not agree with my lower GI. I had to quit. Dr. F wants me to start up again, but with the addition of two anti-inflammatories, which I am concerned about.
When I started doryx last summer my myositis-like dark spots on my shoulder blades, back and neck faded away and are completely gone now.
There is more going on here than I understand, but I'm getting there. I think the lyme test will tell me what I need to know to move forward.
Eva,
Thanks, I thought the doses he was suggesting were high. Wow. You were taking a lot more. it's good to know that it washes out eventually. Right now, it seems overwhelming, but you have survived, and done really well, so that is encouraging.
I'm going for the lyme test before I start anything, though. I think that's prudent.
Margaret
[user=1323]Margaret Mueller[/user] wrote:
It has bounced from 1013, to 750 to 720 (3/12), to 835 (3/25) and he is concerned that my muscles are going to be irreversibly harmed.
Margaret–
What type of inflammation numbers are these? My CRP numbers were 134 at the beginning which is quite high, so I'm curious what kind of test results these are.
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Hi Margaret,
I am curious about how you got a MD diagnosis. (I believe we may have touched on this in a post long ago). Did you have the genetic tests done? Which type did you test positive for?
The MD makes me a little suspicious. We were sidetracked with this for several months early on mostly because of our inexperience and the arrogance of the specialist we were dealing with. We spent thousands of dollars on genetic tests – all negative. Is there any family history? It seems unlikely (altho I guess it is not impossible) that you would be dealing with this AND an autoimmune disease.
I am a little hesitant to give advice because I don't know for sure if we are on an “upswing” , all I have is our experience to share:
We did have the Igenex test done, and SEB did test positive (IGG) by the lab criteria, and are now pursuing Lyme treatment protocols. We are currently taking IVIG and trying different types of antibiotics (lately IV Rocephin).
SEB had been on prednisone for about a year and it did bring CPKs and inflammation down, but they always jacked right back up if he went off of a high dose. He weaned himself off as of January and has been “holding steady” with the IVIG & a/b.I can understand wanting to prevent muscle damage as this is something we have yet to recover, but I am encouraged by other posters on this board (Parisa, Eva Hollaway) that this can be recovered.
I would definitely get the Lyme test done, as this can provide you with some direction as far as treatments.
Here are some links showing the possibility that Lyme bacteria can affect muscles. It seems that this manifestation is less common (or just less recognized??) than arthritic or neurological symptoms.http://iai.asm.org/cgi/content/full/71/12/7087
(hit the “Full Text (PDF)” on the right margin to see the whole article.
http://www3.interscience.wiley.com/cgi-bin/fulltext/112731021/PDFSTART?CRETRY=1&SRETRY=0
http://www.jstor.org/pss/4457639
Good luck!
Tisch
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