Lori222
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March 18, 2011 at 3:40 pm
the sc sounds good to me—must be easier on the veins and the kidneys???Can one do this while still at the loading dose amt–2 gm per kg or does it have to be once at the maitainance dose? I would prefer this method any day over sitting in an infusion room for 5 hours. Is it like an inslin injection?just inder the skin with a syringe? will be awaiting your updates on this procedure—it must give the body a more constant level too, where its every few days instead of less often. I will definitely ask about this—:) Lori
March 17, 2011 at 6:55 pmmost of the reputable articles i ‘ve read have stated that it is important to test where your levels are before taking vitamin d. Some have said to take it–wait two weeks, test your level and then alter the dose from there. The only problem with this is many dr’s do not reguraly test for vit d.
If you go into the neuro talk support group site, there is a lot of information posted by a member named Mrs.D under the stickies section in that site. There are many links to numerous websites on the vit d subject. I found them to be pretty informational. Many sites have stated that you cannot get a toxic amount of vit d from the sun–but you can from supplements. There are also a few articles by pub med stating that vit d2 (the rx type) is beneficial in axon regeneration. Most of the info out there is for the d3 type (sun or otc supplements) which is suppose to “regulate” not “enhance” the immune system. PLEASE read some of the info. on it if interested in it–i am only writing here from various info i’ve read—have no personal experience with vit d at this time. LoriMarch 15, 2011 at 2:38 pmmy neurologist told me to give the prednisone 2 months to see if it would work. on the 4th dose/day my leg muscles became weaker even though internally my energy increased??? I did give it 2 months at 50 mg (i weigh 140) so this was high dose for me. It did not work for me—-my neurologist felt that by giving it a whole 2 months we at least determined that it was not going to work and would not attempt that route again. Lori
March 13, 2011 at 10:48 pmI have read that the vit d defiency is more prominant in northern states, and that levels tend to be lower in the late spring —which makes sense that it would be lower after winter. I live in maine—-which is by no means a “sunshine ” state either. Lori
March 13, 2011 at 10:42 pmsorry to hear of your prednisone experience. I was put on 50 mg Which i was later told may have been too much : ( Anyway, went through a lot of what your talking about—hated it!!!.On my 4th dose i got extreme muscle weakness, continued at the high dose for 2 months–until at which point a family emergency happened and i literally thought i was going to die from the prednisone. called dr and started weaning off then. unfortunately it did not help me—fortunately i’ll have no reason to go on it again since it didnt work.
would love for you to share your cidp experiences–that’s how we learn….and thanks to the prednisone–just think you will be up all night looking for something to do!!!! LoriMarch 13, 2011 at 10:24 pmthank you for sharing your info/experiences. Kelly you mentioned what i had been reading and was concerned about –the vitamin d enhancing verses boosting the immune system. that was my concern, if one were to have an overactive immune system, how the vit d would effect it.
i also read through older posts regarding this and it does seem there is a large number who were tested and come back low. I have been very concerened with the whole nutrition/supplements/vitamins since getting cidp–the ivig can stop the attack, but it is our body that needs to heal and regenerate the nerves–I just want to be sure it has every thing it needs to do that. : ) LoriMarch 12, 2011 at 7:02 pmwould love to have the details posted : ) especially the criteria for getting accepted. Am not at that point yet–but definitely reading up on it and keeping it in the back of my mind in the event the ivig doesnt work. Best wishes to you and hope you are accepted into the program. Lori
March 9, 2011 at 9:57 pmI am currently being treated with just IVIG, like you i can still walk without assistance–but it is more difficult and tiring than before cidp. I think neurologists often base the treatment on now bad the disease is. mine started with ivig (2 gm per kg) every 12 weeks. We did this for a year. I did not worsen-but no significant improvement either. In december we increased it to every 6 weeks (still on loading dose) too early to tell if its improving things yet. at my request we added a trial of high dose prednisone–it was not effective for me, in fact- made me worse, so be careful. My opinion is–even though my cidp is not as bad as it could be–why wait for it to get worse. I feel like its not being treated aggressive enough, ive mentioned more ivig, plasma x/c etc and am not getting anywhere—-so Im off for SECOND OPINION!! hopefully this helps–give your neurologist a fair chance and listen to his/her opinions but if you truely feel their not doing everything that can be done for you then keep searching. Good luck Lori
March 9, 2011 at 9:39 pmthank you for the insight 🙂 yes it is my thymus–I am 47 so should not need it at this point in my life. Dawn–possibly it was not recommended for kevin due to his young age and his thymus still making necessary antibodies??? the thymus has a lot to do with our neuro muscular junction AND it creates antibodies. In my case, my thymus is larger than an average person my age and has some thymic tissue. if it werent for the neuromuscular symptoms then it would never have been discovered. I have no other thymus symptoms. My primary care dr said if it were him and he was my age he would have it out. Its a gamble it could do absolutely nothing or it could stop the abnormal antibody production??? I am awaiting a date to fly to Mayo in Rochester for an appt. with Dr Dyck. I will wait to see what his opinion is before having it out. Thymectomys now are much less invasive than years ago, they can be done with a tiny incision and scope instead of the old way of breaking the breastbone, etc. Dawn i had read some of your older posts on the thymus—could tell you had been researching this subject too : ) Lori
February 1, 2011 at 6:45 pmI am very thankful for all the people who have attempted and had the sct : ) The success stories coming from all of you will hopefully make it easier for the rest of us if and when we come to that decision. that is after we’ve jumped through the hoops and tried the other treatment plans first—ugg!! Lori
February 1, 2011 at 6:37 pmSorry to see you go–You have wonderful information to share with everyone–I thank you for the great sites you have steered me toward and wish you the best. Lori
January 16, 2011 at 8:35 pmI did find Julies posts on the sc ivig. They were interesting. It does seem from reading the posts that the sc ivig is only for maint. doses, not loading doses—puts me out–im on loading dose. But for others on a maint dose, may be worth checking.
there were some clinical trials when i googled– but a lot of criteria—and you may go through it all and receieve the placebo : ( LoriJanuary 16, 2011 at 11:52 amI couldn’t pull up anything in the search for this—it would be great if they started offering it for gamunex users—would be much easier than traveling and it seems it would have a more constant level in the body this way—-also the cost must be a lot less?? Im excited–think i will go google it right now!!lol Lori
January 11, 2011 at 10:39 pmhelpful info–thank you. Yes the one day at a time–I hear you, that’s what im doing with this whole thing too, trying not to rush into anything. I have high hopes that the IVIG will work for me–But, Its good to know whats available if it doesn’t. In the event the ivig isnt going to work I want to have this process started or at least do lots of research on it so im not without treatment for a lengthy period of time giving the nerves more time to degenerate. I am excited to see what you find out in a few weeks–the anticipation must be horrible for you!! How were the accommodations in the area? were there reasonably priced hotels nearby? My insurance is anthem blue cross, the ppo plan. They have paid all my costs so far to receive treatment in Mass even though I live in Maine, so far they have been great through this whole cidp journey I’m on. Lori
January 10, 2011 at 10:28 pmyou definitely have enough on your plate–having to watch your child suffer with this horrible disease….I thank god that it is myself and not one of my 3 children who have to deal with it. Thoughts are with you –and I hope your insurance company comes through for you. Lori
