What can I expect from my doctor?

[newlyb12def]

I was diagnosed with definate MS about a month ago, and have started on rebif. I've been titrating and will be at my target dose of 44 mcg Friday of next week.
About 2 weeks ago, I began experiencing muscle stiffness in my left leg- accompanied by weakness and dragging. I called my neurologist, and he reccommended I ride it out b/c of the side effects of steroid therapy. I stressed the physical demands of my job- and he "granted" me an appointment this coming Monday. In the mean time, I have had muscle spasms in my lower back and leg.
I feel the double blow now of adjusting to the meds and feeling the fatigue of dragging that leg along.
I guess what I am asking is what can I reasonably expect during a relapse? I understand that what I have been experiencing is not a medical emergency. I know I am not his only patient. But how long is reasonable to wait before being seen? And is it appropriate to ask your PCP for assistance if your neurologist leaves you marooned?
(I previously posted on the vitamin and mineral deficiency board because my MS symptoms were originally attributed to b12 deficiency.)

[lady_express_44]

Welcome to the forum.

I was diagnosed with definate MS about a month ago, and have started on rebif. I've been titrating and will be at my target dose of 44 mcg Friday of next week.

So you started on Rebif right away, and made your way up from 22 mg to 44 mg over this past month?

About 2 weeks ago, I began experiencing muscle stiffness in my left leg- accompanied by weakness and dragging. I called my neurologist, and he reccommended I ride it out b/c of the side effects of steroid therapy.

You must have been in an attack when he started you on steroids, so what were your symptoms then?

When did you go on steriods; how much did you take; did you taper off?

I stressed the physical demands of my job- and he "granted" me an appointment this coming Monday. In the mean time, I have had muscle spasms in my lower back and leg.
I feel the double blow now of adjusting to the meds and feeling the fatigue of dragging that leg along.
I guess what I am asking is what can I reasonably expect during a relapse? I understand that what I have been experiencing is not a medical emergency. I know I am not his only patient. But how long is reasonable to wait before being seen? And is it appropriate to ask your PCP for assistance if your neurologist leaves you marooned?
(I previously posted on the vitamin and mineral deficiency board because my MS symptoms were originally attributed to b12 deficiency.)

I guess the question is what can he do to help you?

Sometimes people try doing two rounds of steroids, but personally I always ride out the attacks. There are potential short and long terms risks and side-effects from steroids, and many people prefer not to use them EVER.

There is an adjustment period with the interferons, and it can take several months. The side-effects might include a flu'ish feeling, depression, etc., but I've never heard them causing MS-symptoms to act up. It is far more likely that the steroids didn't affect the relapse you were in, and you are now riding out the rest of the attack.

I don't ever see my neurologist during an attack, and rely mostly on my GP. I have had MS a long time though, and I read a lot (especially on here) about what to expect, so I usually understand what is happening to me when it does.

Maybe if you provide a few more details about your MS experience and meds over the last month, we might be able to guide you better.

Cherie

[0357]

ABCR drugs take an adjustment period and sometimes they just never agree with you. Some people are switched to Copaxone for this reason and too I know of some who couldn't tolerate that either. But importantly, give it time. Others hopefully will be along with tips to avoid side effects. Make sure you get your liver tested I 'believe' it's every 3 or 6 months.

Yes, stiffness and weakness are a common side effects of the ABCR drugs. Did your neuro give you a tape to watch with a booklet of common side effects and a long list of not so common side effects; comes together in a kit? If not, ask for it or call your ABCR drug company and request one be sent to you.

Steroids never did work on me but they do many. If you're having a 'bad' attack, I would consider some type of drug your neuro recommends. As the above poster mentioned, they come with many bad side effects too.

It takes 6 months to see my neuro BUT he has a nurse you can talk too during office hours and she relays the info back to him...he acts accordingly and your pharmacy is called by the nurse if need be. Just how my neuro's office works...

Baclofen is a common drug prescribed for spasticity and spasms. Works wonders for me.

Take care.

[0357]

For those on Rebif...

[Abby2006]

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board


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[newlyb12def]

Thank you for the warm welcome, and the responses!
To answer a few questions:
The rebif comes in a titration pack with 2 weeks (6 shots) of 8.8mcg doses and 2 weeks (also 6 shots) of 22 mcg doses. I have 2-22mcg shots left- then I go to 44mcg shots. My neurologist gave me an information kit, the mail-order pharmacist was helpful, and the drug co sent an RN out with questions/concerns/helpful hints. I've had good support in that area. I understand that the medication needs some time to work.
I spoke to my neurologist on the phone and he attributes the new symptoms to MS activity, not the medication. (Although I have been experiencing increased fatigue since I started on 22's.) I have not been prescribed any kind of medication for a relapse- ever- steroids or otherwise.
My main concern was whether having to wait so long for treatment during a relapse was par for the course or not. I want relief from my symptoms.
I just don't really know how the system works.
Thanks.

[mmcc53]

I would:

Ask your doc about IV steroids - for many MSers they draw a relapse to an end. Steroids do not mean you have to stop the Rebif. In fact many docs prescribe a round of IV steroids tight before even starting ABCR drugs, and they are used for people on Rebif and the other ABCRs as needed.

Watch the Rebif, and as the others said, give it some time to work. If it doesn't, though, ask about switching to another.

I took betaseron for 18 months until we discovered that it WAS making my MS symptoms worse. This is very unusual, though. Try at least 6 months of the Rebif.

Take a WRITTEN list of the problems you are having and how they have improved or gotten worse. There are many symptom drugs that can help with things like spasticity, cramping, etc. Almost everyone on disease modifying drugs also take drugs for symptoms.

If at all possible take someone with you to neuro appointments. Research has shown that people only accurately remember a very small proportion of what docs tell them. A second set of ears helps a lot. Also take notes while the doc is talking.

Be sure your B12 levels are tested periodically. B12 defficiency is a common problem with autoimmune diseases.

Good luck, and let us know how things are going

[Jules A]

My main concern was whether having to wait so long for treatment during a relapse was par for the course or not. I want relief from my symptoms.
I just don't really know how the system works.
Thanks.


Hi and welcome,
If I read you correctly and you called your Doc yesterday and have an appointment Monday that is nearly VIP status in the world of MS specialists, lol, especially for "just" flare symptoms.

For myself, I'm a big fan of starting steroids asap in hopes of beating back the damaging inflammation when in a flare so for me a neuro that isn't in favor of being proactive in this regard would not suit me. My neuro will call in a script of Roids for me if I think a flare is coming on but I have been with him for a while and we have a good working relationship. FWIW I have only taken them twice in over 3 years because they definitely can cause side effects and long term issues.

I'd go to your appointment, talk about the muscle spasms also because there should be some meds ie. Baclofen etc. that you can try for that, and just feel him out. If this isn't a good fit, find another specialist. I haven't had to do this but many people will use their PCP to augment their neuro visits.

Hope you feel better soon.

[Virginia]

Hi, I was diagnosed 8 years ago and have been on Rebif for the past six years. I was on Avonex for the first year, and that did cause me to have some spasticity the day after my shot. Then I was on Copaxone for six months, but was fast getting worse, so I then went on Rebif.

Whether Rebif is right for you or not I do not know, but I do think it is a good drug (as far as MS drugs go). Please give it plenty of time to work, and yourself plenty of time to adapt to it. I do feel you might be better off in the long run. There are some other drugs coming down the pike for people who are just being diagnosed, so someday you may want to change, but these drugs do NOT work if you keep changing too much. As you probably know, they are meant to work over the long run.

I hope you have good luck with Rebif, and that you do well with your MS. As far as your Doctor appointment is concerned, unless I was bad enough to go to the emergency room, that is about as soon as I would get an appointment with my Neuro and possibly sooner. Maybe some of them just feel that since there isn't an awful lot that can be done for us, that our "day to day" stuff doesn't warrant anything too fast. For us, it can be an eternity.

Welcome to the forum.

Virginia

[newlyb12def]

Thanks again for all the help.
I still take monthly b12 injections, and my recent numbers were in the low 600's. I have a script for monthly blood draws (CBC and liver panels, and thyroid every 3 mos).
Just to clarify, my new symptoms began Sat June 21st. I called my neurologist that Monday the 23rd. My appointment is July 7th (hardly VIP status in my opinion).
I am happy to say that I think that this episode is resolving. I have a little residual stiffness and weakness in my left leg, but I am walking much better today and have had no muscle spasms since Thursday night!:)

[Jules A]

Just to clarify, my new symptoms began Sat June 21st. I called my neurologist that Monday the 23rd. My appointment is July 7th (hardly VIP status in my opinion).


It isn't unusual for it to take months to get in with a specialist.