Relapse but with a positive note

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Relapse but with a positive note

Postby MrsGeorge » Mon May 19, 2008 5:22 am

I have very obviously had another relapse. My R leg is dragging and weak and I have balance problems and weakness in my R arm too. As well as the pain all over my lower body.

I know I usually moan so I wanted to say something positive. My GP is great, she has prescribed me something-pentine for the nerve pain and is gonna kick some butt for me! I also have a physio appt tomorrow and an orthotics one straight after to get a brace for my leg / foot. This was all in response to phone calls today! I finally feel like something is happening.

She also advised that they don't do IV steroids in the UK but she can put me on a course of oral steroids. I said I would think about it and research it.... any suggestions? I'm scared of steroids because i really can't afford to gain weight. however, if it makes the relapse less bad.......

On the downside because of the relapse my husband and I have decided that I need to get onto meds and get myself stabalised before we have a family so after over 2.5 years trying for a baby we're going to stop. It's heartbreaking because it's something we both want so much. We need to be sensible about it all though.
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Postby Coastal » Mon May 19, 2008 8:17 am

Hi Mrs G,

I'm glad you have good support from your GP but sorry to hear about the relapse. Hang in there! You sound as thought there's been a long period of inactivity/slowness through the old NHS, but its good to hear there are good people rooting for you.

I'm a complete novice - so I have no wisdom for you I'm afraid. All I can do is try to encourage you, as you have encouraged others ( including me.)

Good luck with everything.
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Postby Sandrine » Tue May 20, 2008 6:55 am

Dear Mrs G,

I would prefer IV steroids, 3x 1000 mg Methylprednisolone or 5 x 1000 mg, and than complete discontinuation, no reduction in dosage with oral prednisolone. This is how I did it several times and I never gained weight. Usage period is too short.

You can't take 1000 mg orally (my sister once did 500mg/day orally, wasn't nice). And less is nearly almost useless, especially for spinal cord lesions (sounds like you have one).

You will only gain weight if you take steroids for a longer period of time. After 3 or 5 days you will maybe accumulate some water in your body, but no fat.

Sorry for my english...

All the best,
Sandrine
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Postby TwistedHelix » Tue May 20, 2008 8:35 am

Hi Mrs. George,
While reading your post I felt sorry to hear about your relapse, pleased you'd found a good doctor, then sorry again that you decided to delay trying for a baby. MS has an impact on so many areas of our lives that anyone who thinks it's " only" about disability really need a good talking to.
At a guess I'd say you've been prescribed gabapentin, which is often given for neuropathic pain and can also be useful for fighting spasticity, so If that's a problem for you it may have a beneficial side effect.
I've been given IV steroids a number of times – about six years ago now – so I was surprised to hear that the NHS don't use them any more. I'm pretty sure I remember reading comparisons between intravenous and oral administration and no difference was found.
Sandrine is right, (in superb English, by the way: I don't know why you are apologising, Sandrine!), that on a short course of steroids you won't gain weight, only retain water and therefore get a bit bloated. Be prepared, though: when you finish the course you will be peeing the excess fluid away continuously!
Personally I would prefer to taper off the dosage gradually, because I stopped suddenly once and felt very unwell for a couple of days.
I hope very much that this episode will be over soon and you can start trying for a baby again,
Dom
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Postby Sandrine » Tue May 20, 2008 9:28 am

to taper off the dosage gradually


I didn't found that expression in my dictionary, thank you. For me, it's better to stop suddenly (I tried both), because with this dose reduction over several days I got an incredible number of giant pimples :oops: And sleep disturbance. Seems to be better as short as possible...

And with or without tapering I had that "steroid withdrawal" with aching muscles etc. But I also know some people who prefer to taper off.

(in superb English, by the way: I don't know why you are apologising, Sandrine!)

Thank you :) I have no native english speakers around, only collegues from China, India, Portugal, Poland... Sometimes I think we develeoped our "own" strange English :lol:


@Mrs G:

I'm not sure how this is managed in other countries and if I understood your problem right but from the point of view of a lot of German neurologists it's okay to be on Copaxone or Interferon beta and stop it when the pregnancy test is positive (or other way around "Copaxone or Interferon beta is no reason for a termination of pregnancy"). This is not valid with Natalizumab or immunsuppressive stuff. If you like, I can ask a german neurologist which drugs are safe if you and your husband want to go on "trying".

Another possibility is off-label-use of IV immunglobulins. That is safe for sure, at least it is recommended in Germany for women with active MS who are planning to get pregnant or are breast feeding.
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Postby Nenu » Tue May 20, 2008 9:55 am

I've done taper/non taper off IV steroids. First time was 5 days with 1 month to taper off, and while I didn't gain weight, I also didn't sleep with the oral drugs. It was pretty awful.

Second time, 3 days IV, and no taper off, no weight gain, and I could sleep regularly.
Dx RRMS March 5, 2008.
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Postby Wonderfulworld » Tue May 20, 2008 11:27 am

Mrs George
I am sorry to hear you're having a relapse, what a pain.
And astonished that the NHS doesn't do iv steroids any more, how strange.

In Ireland we'd get iv steroids for relapses that effect mobility or functioning etc, but probably just oral ones for lesser relapses that are just (!) fatigue or sensory in nature.

Having had both I'd prefer IV and quick too. Was on one IV that was then tapered orally for 6 weeks and I got a roundy face, facial baby-hair, and a swollen belly and thin skin! When it was a shorter oral dose I didn't get these side effects and I didn't put on weight.

IV or oral I get cranky and can't sleep so I only take them if I'm really not feeling a relapse lift, or if it's very bad.

Sorry to hear you've decided to postpone trying. I have been through that mill, it's very tough. I finally had a little son 3 months ago, best thing I've ever done, but I'd had 2 if not 3 miscarriages prior to him. I gave up Copaxone totally before trying this time. The previous pregnancies I gave up when I found I was pregnant, but there may have been other reasons that I lost them.

The best advice I can give you is to try and get as strong as you can prior to conceiving - it will help you get through the pregnancy and early days with the baby. Your MS may totally disapper during pregnancy and you may feel great. A month from now you could be feeling totally different and ready to try again. Wishing you every good wish.
Hugs.
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Postby MrsGeorge » Wed May 21, 2008 2:30 am

Thanks for you replies. Things are still moving forward. I saw Physio & orthology yesterday so I now have exercises and a very sexy (honest) leg brace for my lower leg and foot and it is amazing the difference that has made. I have not noticed the gabopentin kicking in yet but I am weaning onto it. Can't wait though - want to be able to ahev a bath without it hurting!

I also finally have an appointment for next week with the MS neuro so will finally be able to start meds (i think they do beta interferon).


As for starting a family, it is totally heart breaking having to stop but i found out last thursday that I have polycystic ovaries so I will need help getting pregnant. I think that to get any help on the nhs I will have to lose at least another 30lbs anyway (have lost about 35 so far). So stopping for a while makes sense. It's just hard. I will have to throw all my energies into being an aunt when my 2 nephews arrive next month!

ps Sandrine - fab English!
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Postby Sandrine » Wed May 21, 2008 3:19 am

Dear Mrs G,

I've ask a medical doctor (she has MS, too) yesterday. She told me that Biogen (> Avonex) now even inofficially claims, that interferon beta is safe even during pregnancy... I would not recommend interferon beta during pregnancy because in the first trimester of pregnancy it appears to be associated with an increased risk for fetal loss and low birth weight according to some publications I found.

There are some publications about (non-planned) pregnancy and interferon beta. I don't have full text access to all the journals (e.g. Neurology) but I can ask someone.

Here is an abstract from
Pregnancy outcomes during treatment with interferon beta-1a in patients with multiple sclerosis. Sandberg-Wollheim M et al.,
Neurology. 2005 Sep 27;65(6):802-6. Epub 2005 Aug 10. Review.

BACKGROUND: Although patients with multiple sclerosis (MS) are advised to stop interferon (IFN) beta-1a therapy before becoming pregnant, some patients become pregnant while on treatment. METHODS: We examined individual patient data from eight clinical trials with IFNbeta-1a. RESULTS: Of 3,361 women in the studies, 69 pregnancies were reported, of which 41 were patients receiving (or who had stopped receiving within 2 weeks prior to conception) IFNbeta-1a (in utero exposure group), 22 were patients who discontinued IFNbeta-1a treatment more than 2 weeks before conception (previous exposure group), and six were patients receiving placebo. The 41 in utero exposure pregnancies resulted in 20 healthy full-term infants, one healthy premature infant, nine induced abortions, eight spontaneous abortions, one fetal death, and one congenital anomaly (hydrocephalus). One patient was lost to follow-up. The 22 previous exposure pregnancies resulted in 20 full-term healthy infants, one healthy premature infant, and one birth-related congenital anomaly (Erb palsy). CONCLUSIONS: The majority (21/31) of pregnancies that had the potential to go to full term produced healthy infants. The rate of spontaneous abortion was higher, but not significantly so, in the in utero exposure group compared to general population estimates. Until more exposure data become available, patients remain advised to stop IFNbeta therapy before becoming pregnant.

Other example:
Interferon beta babies.Neurology. 2005 Sep 27;65(6):788-9.

So if I would like to get pregnant (still no man around :lol: ), I would go on with Rebif until the test is positive and than stop.

I have no idea about that fertility treatment for polycystic ovaries, but I wish you all the best - for your weight loss and the treatment!

Sandrine
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Re: Relapse but with a positive note

Postby NHE » Wed May 21, 2008 4:31 pm

Sandrine wrote:She told me that Biogen (> Avonex) now even inofficially claims, that interferon beta is safe even during pregnancy

Given this statement from the abstract you cited...
The 41 in utero exposure pregnancies resulted in 20 healthy full-term infants, one healthy premature infant, nine induced abortions, eight spontaneous abortions, one fetal death, and one congenital anomaly (hydrocephalus).

... 46.3% of in utero exposures to interferon-beta resulted in some catastrophic event. That hardly seems like a recommendation for safety during pregnancy.

NHE
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Postby Sandrine » Thu May 22, 2008 12:57 am

I'm sure that study was not financed by Biogen...

But concerning the data:

Induced abortion doesn't mean that there was a IFN-related reason for the abortion. I don't think that counts as a catastrophic event.

And for the spontaneous abortions - we don't know in which month that took place. In the first trimester it's common. They say the rate was not significantly higher compared to "normal" pregnancies.

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