MS Progressing

[dancinggirl148]

Hi
I am new to this board and have a couple of Questions
I was diagnosed with MS in 2008, and was initially on Betaseron but I did not do well on it,
I them went onto Avonex  and did not do too well on that either.
So I made a decision to come off all meds, which may have been a mistake, as just this year alone
I have had five pretty bad flares,

My Neuro had me on prednisone, which has subsequently caused type 2 diabetes, so now when i get any open injuries
i do not heal very well,

I had my last MRI 3 weeks ago and the neuro has informed me that my MS is progressing aggressively and wants me to try another med to slow it down.

So I guess my question is, has anyone stopped taking meds for MS and gotten progressively worse, or would the progression have happened anyway, as i understand it is only 33% effective

and the second question is, could the new lesions on my MRI also be caused by the diabetes and not the MS

I am basically confused about what is going on with me and need some advice

I am really not too happy about having to give myself even more shots on top of the insulin, so would prefer to stay away from shots

I would really like to hear others peoples views on meds or if they have MS plus Diabetes

Tanya

[HVAC]

The diabetes would not cause lesions. No one knows for sure if your MS would have progressed if you were on a Disease Modifying Drug. The problem is that with out a DMD progression is likely. Understand that when you start taking DMDs you do not go back to where you were before the progression. For an example if you were not in a wheel chair and you stopped your DMD and you ended up in a wheel chair when you start taking a DMD again you will probably still be in a wheel chair. If the damage is done it is permanent. No doctor can tell you what will happen. I got MS before DMDs and all my damage is permanent. I am not in a wheel chair. I do have permanent double vision as well as many other damage.
I am not on a DMD but I have terminal cancer. All of us can other illnesses besides MS like diabetes which is rough.
Alex

[fast68]

I have have had ms  for 2 years an have got worse each month. I cant walk now in wheelchair but not giving up.  Taking prednisone cellcept pyridostigmine.  

[twopack]

I have seen Tysabri listed as an immunomodulator and I've seen it listed as an immunosuppresant.  It doesn't seem to be quite clear so I withdraw the statement I made and will refrain from stating any class for this drug in the future.

Tysabri DOES increase a person's risk of infection.  This could be a significant factor for a person with diabetes who might already be prone to infection and have difficulty fighting them.  Individuals will always need to be evaluated by their physicians and cleared through the TOUCH program before using Tysabri anyway.

Tanya, increases in BP and blood sugar are common side effects of steroid use.  I hope your elevated blood sugars and diabetes diagnosis will disappear as your system is cleared of the drug.

[dancinggirl148]

Hi

I have been taking prednisone for 3 years, to control inflammation in a few internal organs,
The Rheumy is not sure what is causing the inflammation, he thought perhaps sarcoid, but tests proved negative

Tanya

[kwarendorf]

Just a clarification of something mentioned here. Tysabri is an immunomodulator, not an immunosuppressant.

By the time I was diagnosed I had moved on to SPMS. I have had 12 Tysabri infusions and had no significant progression of my MS.

Kyle

[supermum_ms]

Hey Tanya,

Curiousity here but how long have you been taking Prednisone? and Why?

cheers......JJ

ps http://www.drugs.com/sfx/prednisone-side-effects.html

[dancinggirl148]

Hi

Thank you for replying, of course you are right about the chicken and the egg
I take it having diabetes and MS is not that common ?

It kind of stinks that i am not certain what is causing what symptoms, but i try and deal with it as it comes up, although I do sometimes kick myself for coming off the DMD, but like you say no one can tell if i had stayed on it, if it really would have made a difference

I believe the diabetes I have may improve considerably once i am off the Prednisone, i am down to just 2mg a day now, and in ten days will be off it,

I really appreciate your reply, and will now check out the health pages

Tanya

[dancinggirl148]

Hi Twopack

Thanks for the prompt reply,

I am seeing an MS Specialist right now, he is very good if rather pompous,
he is not giving me much answers,  he just told me that the MS is progressing
aggressively and as I now secondary progressive there is not much they can do about it, as most of the Drugs available do not work with this type of MS.

He did suggest Aubagio in pill form, and has left me to consider it and get back to him, he said this is a relatively new treatment, but I am thinking he told me there is not much in the way of medication to treat Progressive MS, so why would he mention this one  

I am not overly worried about the MS, i have learned to live with it and the relapses
even though it has gotten a lot worse, the 5 relapses have been since July 2011, basically one every other month, and each time the Neuro has recommended a  DMD until the last time i saw him three weeks ago,

the last flare has not gone away it is now almost constant, but i guess i will learn to live with that too,

I was just worried that he was getting things wrong, and the diabetes was giving me a lot of the problems,
as at one point the neuro told me that a lot of white spots on my brain were caused by the diabetes, but they were secondary to the lesions from MS, i doubted him as i have only had the diabetes for 2 years, then he added that the 6 new lesions lit up like a Christmas three

Thanks for your reply . I will try talking with my primary as i usually get more answers from her, but right now she is on vacation and i am not keen on the other docs at the office

Tanya

[supermum_ms]

Hi Tanya and welcome to our little community!

We dont have many community members that have both MS and diabetes, so its not a common topic of discussion but i'm sure someone will have information to pass on to you!

One of the main problems with your questions is that they are basically chicken or the egg senarios, no one will 'ever' be able to tell you with 100% certainty or even proof that not being on meds caused 'your' progresion or that 'your' one of the people that DMD's dont work for so it wouldn't of made a difference anyway, sorry but its just a maybe answer.

Its possible that all or some of the new lesions were caused by the diabetes and not MS, though a big clue would be, if any of the 'new' lesions are lighting up, those ones are from MS. Think about it though, what are the odds that your recent development of diabetes caused the lesions and not your MS? In my mind, its less likely, was there really enough of a time frame for the diabetes to have caused any brain lesions yet?

Are you considered trying any of the newer DMD's that are pill form or is that totally a no go?

Cheers..........JJ

ps sorry i couldnt help much

[twopack]

I hope someone here can share their personal experience about living with MS and diabetes at the same time.  I'm not going to be any help with that one.

I do hear your frustration though.  It sounds like you need a MS specialist who can take some time to really explain what is going on and put some options on the table for you to consider.  Have you ever had a second opinion about your treatment or overall plan of care?

I'd encourage you to not spend a lot of time dwelling on what might or might not have been had 'things' been different.  They are what they are at this point and you can only move forward from where you are now.  Don't get me wrong - you have every right to be angry and to express doubts and regrets.  In fact, it may be a good idea somewhere along the line to ask your physician about a professional who could help you work through those feelings.

But right now you need to concentrate on getting your MS treatment on an effective track.  Most disease modifying medications are still administered by injection.  Gilenya and (the very recently approved) Aubagio are the only two options for therapy in pill form at the moment.  Others are expected to become available soon.  Some promise better results or fewer side effects but for now they aren't even an option.

One option that does come to mind is Tysabri.  If your MS has been on an aggressive binge you might want to investigate if using it is an option.  It is given intravenously at an infusion center once a month.  Several members here use it.  It is a safer drug to use than in years past because of recent developments in testing and screening to evaluate each person's risk factor for use.  It has a better record at controlling relapse than most disease modifiers so might be worth considering - at least until other oral drugs are available.  HOWEVER, it is an immunosuppressant drug and I don't know if that would be problem considering your diabetes diagnosis.

There are a few people here also being treated with a drug called Cellcept.  That is an immunosuppressant pill that is usually given to people who have organ transplants (to prevent rejection).

To my knowledge, diabetes doesn't cause MS like lesions to appear on MRI of the brain unless they were to appear as a result of problems with blood flow.

I do question how it is possible you have had five flares in a year that hasn't yet gotten all the way through its tenth month.  By definition, a new flare is supposed to be proceeded by 30 days of stability.  I suspect you have had fewer than that but that each lasted much longer than it seemed since symptoms will sometimes ebb and flow within a flare before resolving or reaching a final plateau.

Again, I encourage you to find a doctor (or a nurse in your present doctor's office) who can answer some of your questions.  We are glad to help wherever we can but you need some facts specific to YOU to find out where you are and make good decisions about what direction to head.

Welcome to our community.  Please continue to pick our collective brain as questions come to mind and take a look around at the HealthPages that contain a wealth of information.  You can find some links on a sidebar to the left or go directly to an index here: http://www.medhelp.org/health_pages/list?cid=36