Neuro wants me to go back on Betaseron WHY?

[tyler911]

Hi All

I saw my neuro on Thursday, told him it would probably be my last visit, as i now have no insurance,
he wants to keep me on the 50MG of Prednisone for the rest of the month then taper me down gradually to perhaps 5mg a day within 8 months

My Concern is that he wants me to start Betaseron again, and i really do not want to go there, I still have shot sites that are healing from 3 months ago, that's when i stopped taking the shots, as ii was having a bad reaction to them
he has decided that after consulting with  the new MS specialist that i should be back on a DMD as the new MS specialist says i have both MS and sarcoid, the old MS specialist who diagnosed me took that diagnosis away
after he found out i had sarcoid

I really do not know what to do, i am so afraid of shots now, after all the trouble i had with it, and shot sites still healing, what can he be thinking,

I did ask about other DMD and he said that Betaseron was the best one for me, he is just not getting my concerns, he is a very good doc, and i want to stay with him, as he has bent over backwards for me, and he is one that usually listens to what i have to say

So why is he is not listening now, he told me that's what the MS specialist wants me on too, and i really do mpt want to go back on it again

besides now that I haven't insurance, i probably cannot afford it anyways, which is the excuse i am using right now, hoping he will forget about it, which i doubt

What would any one suggest, I have felt fine off the shots, and i am taking Gabepentin, Flexeril, Prednisone, which are treating the symptoms, to some extent, and feel like i can cope just fine without putting anymore drugs into my body

I am at a total loss what to do, all I know is that i really do not want to go back on any kind of shot,
has anyone come off DMD's and been fine, ?

I cannot see what it did for me anyways, other than make me sore and throwing my liver function to hell in a basket,
Oh gees i don't know, I do not need this aggravation right now

I know the final decision has to be mine, but i cannot think straight anymore lol
Any suggestions would be helpful,
thanks
Tyler

[tyler911]

Hi

I think my liver enzyme labs went up after the first month of being on the Beta, if i remember correctly, and the neuro said we are going to have to keep an eye on that,

right now on my last blood work, there was 19 things that were flagged as high this is a blood test that the rheumatologist  (can someone please tell me how to spell that) ordered, and it was like a mile long all the labs he wanted done, well lets put it this way when the results came back there was 25 pages, lol, I guess he did not want to miss anything

I will dig out my lab work and see what was still very high, i know from checking it on Google, that a lot of the highs were not good to have high

It is not so much the betaseron i am not wanting to back to, it is the mere idea of shots, and the trouble i am having trying to deal with the old shots,

Tyler

[tyler911]

see i cannot even spell Tyler anymore ha ha

[tyler911]

Hi Tonya

Yes it is a real dilemma, I want to go with the neuro sarcoid, as that has been proven with biopsies, so I know i have that 100 percent, brain spleen, kidneys etc etc etc,

What I am not at all happy about is being given the MS Diagnosis back again, I felt that the MS specialist i saw, is not thinking outside the box, and as he knows little to nothing about sarcoid, he is assuming all this symptoms are from MS,

I tried to tell him that sarcoid and MS are great mimics of each other, and that the sarcoid has been proven, but MS has not, even though my Neuro and the other MS specialist said conclusively MS, but once the sarcoid had been diagnosed they took the MS away which i was very happy about

Yes my Sed/Ace levels were very high and since  being on the prednisone they have both come down to normal levels, the neuro has tapered me down to 50MG a day now on the prednisone, and hopefully his week he may taper me down to 40MG, that is if he will do a telephone consult, as with no insurance right now, i cannot afford to pay office visits, with no income (that's another story though)

The neuro also has me on flexaril to help with the finger and feet spasms, and it is helping, he also has me on Gabepentin, 1,200MG daily, to help with the pain
though i went to auto refill for these medications yesterday and nearly died, at the cost, $129 for the Gabespentin and $94 for the Flexeril,  then another $25 for the Prednisone,

Well I had to choose which one i needed most, and had to go with the pred, as i know it is way to dangerous to come off that stuff suddenly,

I agree though, I do not believe that I have MS as well as the sarcoid, I have one dumb MS specialist, who as he knows nothing about sarcoid, wants to believe it is MS,
I will not be going back to see him, but i am not going to pushed into taking more shots, when i believe i do not need them

I think it is the prednisone that has made most of the shot sites, become infected, the wounds seem to be pushing out from the inside, and these shots sites are old, from back in Feb/March time, once the lump reaches the skin, it breaks through the skin to become sores, then keep getting bigger and bigger to about the size of a quarter, with read about a half inch all the way round the outside,

the would then becomes a large hole and they are pretty deep, i just have to keep them clean and keep dressing them, I tend to leave them open a lot for the air to get to it so
they can heal but i believe the pred, is slowing that process or is perhaps the reason i have this problem in the first place LOl

heck no lass your not being a Debbie downer at all, I know what this disease is doing to my body, seems like i am more confident with sarcoid that i ever got to be with MS,
MS scared me a whole lot more than the sarcoid did, I don't know why lol,

I will PM you and let you know what the outcome is,

Tanya

[sllowe]

Hi Tyler,

This is a dilemma. If it were me, I would ask the Dr. if he would consider prescribing me a lower dose of beta? I know they can prescribe the 22mgs of rebif, but I'm not so sure about the beta.

Remind us Tyler, did your liver enzyme labs flag right away? Or, was it after full dosing for some time.

This is a jam, but I hate to see you untreated. I too wish we could feel them working - just not always the case w/the lot of us.

stick w/us while your head is reeling on this - we'll pull you through it
shell

[tonyad]

   Hey there :)

   I'm going to have to agree w/ you in that I would NOT do the DMD's at this time!  
My reasoning on this is beacuse of exactly what you had said...Liver issues as well as some others!  Coming from a Fellow Sarcodian...(lol)   You are already compromised from having Sarcoid!

   I am sorry to say,.But I would still be questioning this Neuro and his dx of MS for you.
it is so important to "Get This Right"  Since you have had the actual "Brain Biopsy" and was positive for Sarcoid as well as you have Sarcoid in other organs (right), This is WAY to serious to play around with!  I am NOT in any way saying that you can not have both...becasue anything is possible!

   What I am saying is that NeuroSarcoid can be a VERY SERIOUS thing to deal with. If I remember right, even your SED and/or ACE ws elevated which shows that you are active Sarcoid!  NeuroSarcoid can and Does cause the same sx as MS without a doubt.

   Here is the key though.......Tappering you down off the steroids, having NeuroSarcoid, is not so great!  Sorry if I am being a Debbie Downer  But I know Sarcoid VERY WELL and what it can do to a person.  While I am not saying that MS is a walk in the park..I AM saying that Sarcoid is a VERY Nasty Monster and you not only have it in the brain but in other places also.

    Have you been to the web Site that shows the MRI's of both MS and NeuroSarcoid side by side????    Unless one is way UP on their game......it is very difficult to see the difference between the two.

http://www.radiologyassistant.nl/en/4556dea65db62#p4594f74ccbf19      

Scroll down to about the middle of the page althoug I think it is in there a couple of places ;)


    One of my GOOD friends has NeuroSarcoid, Lung, and somewhere else (sorry, can't remember), Anyhow, she has so many Neuro deficits that are the Same if not Worse than MS.  I just want you to know that I really care and think that it is SO very important for you to be the one who is the most Pro-Active in YOUR Health Care becasue admittedly, the docs have SO MUCH to learn about Sarcoid!

    I hope that i have not Rambled to much and this was certainly NOT to make you upset, but rather just a Friend who has had Sarcoid, Knows much about it and wants the correct treatment for you.

    Have you PM'd anyone from the Sarcoid Forum w/ NeuroSarcoid???  I am sure that your story and theirs will sound so familiar.......

    Wishing you the best :)  Keep us updated.
~Tonya

[Mand125]

Hi Tyler

I'm sorry about the problems that you are having. Alex makes a good point about the DMDs slowing progression.

I am on Betaseron and have been for almost 2 years, I just have to hope that it is helping me and have a feeling that it is.

Obviously I don't know about the problems that you had with it so can't really comment, I found that I was having "site reactions" on my arms, these didn't improve, in fact I think they started to get worse so I have simply stopped injecting there. I feel that the other 6 sites are enough for rotation and don't have any problems with those.

I wish you luck whatever you decide and hope you are able to get insurance cover sorted out.

Mand

[tyler911]

Hi
Thanks for the response

That's what I thought the DMD was to slow the progression, all the other medications i am on are for symptoms, I have more or less decided, I am not going to do the shots anymore
I actually had to flair ups while on the shots, one of ON and one where my whole body went haywire, though I was probably not on it long enough for it to get into my system,

Got to admit i have gotten worse with my balance, but the other medication i am on is helping with it, but i am afraid of progression then sometimes i think oh to heck with it, i can live like this, (lol kidding i think)
I am sorry to hear about your friend i really hope that he improves over time

Tyler

[HVAC]

The DMDs slow the progression. Progression can happen with or with out symptoms. Sometimes they help symptoms, sometimes not. The MS Specialists around here are so convinced in the need for DMDs that many will drop you as a patient if you will not take them. He may also think that with Sarcoid it is equally important to slow the progression of the MS. I know a guy who got off Betaseron for a year. His disease has progressed so much now he wishes he had not. He is back on it. He used to walk unaided now he now he has to use crutches. The DMDs are no fun but neither is progression.

Yes it in the end is your decision.  May be it is the right one for you. No one can answer that.

Alex