Me, My MS and I



Intravenous Methylprednisolone

A relapse is defined as “the sudden onset of new MS symptoms, or the reccurrence of old MS symptoms, which last for more than 24 hours”. The severity of relapses vary, and not all relapses will require treatment with steroids.

If treatment with steroids is required for MS, synthetic gluco-corticosteroids are prescribed which are similar to hormones produced naturally in the adrenal glands. Steroids are given to shorten the duration of the relapse by reducing inflammation and suppressing the immune system. Steroid treatment can speed up recovery from a relapse, but has not been shown to improve the overall recovery from a relapse. The treatment doesn’t work for everyone, and it can take 4-6 weeks for the effects to become fully apparent, but many people with MS benefit from steroids to shorten relapse length.

There are possible side effects which are quite common, including: a metallic taste in the mouth (take mints with you!), flushing of the face and neck (more common in women), insomnia, restlessness and nervousness, indigestion, headache, and increased sweating and fluid retention. Not all of these are experienced by everyone, and they generally disappear once the steroid course is complete. Patients are more succeptible to infection immediately following steroid treatment as the immune system is suppressed, and care should be taken to avoid infections.

I finished a 3 days course of IV steroids yesterday and they always make me feel really rather ill, but hopefully I’ll feel the benefits soon.  A lot of napping was done, and I’ll be off for another nap very shortly! My MS nurse is wonderful and the 1 hour drip each day couldn’t have been easier. Not all hospitals are the same, but I was fortunate enough to have a cannula inserted into the back of my left hand which remained there for the 3 day course of steroids (as opposed to a  new cannula each day), with a tubi grip and dressing protecting it when I went home. Only one needle over 3 days was wonderful! Especially as my veins are quite poor and 3 sites would be difficult to find. Had a great natter with my Nurse for an hour as the drip dripped away, some tea and biscuits, and access to Twitter on my mobile! Thanks to all the Twitter folk who kept me sane and happy, it’s much appreciated 🙂

I’ve added below a couple of pictures (taken during one of the drips), hopefully taking away some of the mystery for anyone due to go for steroids, and to add a bit of transparency to the life of an MSer.

Drip In Action!

The Lovely Room I Was In

Tea and Biccies!

My Cannula

Advertisements

Trackbacks & Pingbacks

Comments

  1. * Damon Davila says:

    Never done this whole bit before… Now if I have to, I’ll have a bit of a feeling for what I’ll be in for! Thanks for sharing!

    | Reply Posted 7 years, 9 months ago
  2. * Nancy says:

    Good sharing, thank you.

    | Reply Posted 7 years, 9 months ago
  3. * Lou Kaszas says:

    Today was my first treatment of Intravenous Methylprednisolone. My doctor ordered a total of three treatments. I have never had this medication but I did have Solu Medryl several years ago.

    Thank you for all the detailed information. I had a metallic taste in my mouth and when I asked the nurse about it, she said that she was not aware that metallic taste was a side effect. I was confused until I read your information and that; yes others also experience a metallic taste. I have not noticed any improvement in my symptoms. With Solu Medryl I notice improvement after the first treatment.

    I was diagnosed with MS in 1983 with Relapsing Remitting and in 1999 I experienced a serious weakness in my legs and arms mostly on my right side. My neurologist changed my diagnosis to Relapsing Progressive. I had a very difficult time with mobility and needed to use a power chair for traveling any significant distance, really anything other then my home. About two years ago my strength in my legs returned and my mobility improved significantly and I have not needed to use my power chair and I returned to almost normal walking. About a month ago I started to experience burning in my feet and then it moved up my one leg past my knee. My other leg started to ach and became weak. My doctor gave me a treatment of oral prednisone but this did not help and in fact my weakness in my right leg got worse. So this is how I started my treatment of Intravenous Methylprednisolone. I sure pray that this medication will help me get my mobility back or at least improve my situation.
    I am sorry for spilling my guts, I am afraid and I needed to express myself.

    | Reply Posted 7 years, 4 months ago
    • Thanks very much for your comment. I’m sorry to hear your symptoms have worsened. Hopefully this set of steroids helps to lessen some of the symptoms for you. It can take several weeks after the steroid dose to see an effect though, so be patient! : ) Let me know how you get on please.

      | Reply Posted 7 years, 4 months ago
      • * Lou says:

        Thank you for your response and works of encouragment

        Posted 7 years, 4 months ago
  4. Hi Jenna,

    Have just come across this blog and have really enjoyed looking around. Found this post (and the pictures) helpful as I feel I may well be in line for some of this soon – am finding my current symptoms hard to shift.

    Though I have a sneaky feeling that if offered I will bottle it and take the oral ones again. Started on Copaxone on Monday and have probably exhausted my meagre reserves of bravery this week.

    Looking forward to reading more on the usual suspects. Hope you are well.

    Andrew

    | Reply Posted 7 years, 1 month ago
    • Hi Andrew,

      Thanks very much for the comment. Glad you found the post useful. Hopefully your symptoms are transient and pass shortly and you don’t need steroids : )

      The IV steroids look worse than they are, and I actually found the side effects were less and the IV treatment slightly more effective than the oral ones. (Just personal opinion). But choosing oral over IV isn’t bottling it – it’s all about what you feel comfortable with : ) Hope you’re getting on well with the Copaxone. How are you finding it so far?

      Hope you’re well.

      Jenna

      | Reply Posted 7 years, 1 month ago
  5. Hi Jenna,

    Sorry for the late follow-up – have not quite figured out how this site works so didnt realise you had replied! Thanks for that though.

    And news is quite good. Neuro and I took a chance on deferring the steroids and the symptoms are now shifting of their own accord which is good. And the Copaxone is going well too – it was something of an ordeal to start with though I was astonished at how quickly the injections ceased to be a big deal. I have written a bit more about that on my pages.

    And the experience leaves me rather less bothered about IV steroids next time they come around which is no bad thing too.

    Hope you are well too.

    A

    | Reply Posted 6 years, 11 months ago
  6. * Donna Applebaum says:

    Hi, Jenna,
    Just found your blog. I am having my first relapse in almost two years. I am taking a two week course of oral steroids. I have had the IV in the past at high does. They dropped my dose too quickly and I almost became suicidal. We are hoping to nip this relapse in the bud. I have also been taking LDN for 9 months. It has made a huge difference in symptoms. I am rather bummed about stoping the LDN while I am on the steroids. The pharmacist actually told me to keep taking it because it is a short course of steroids. The LDN folks in the UK say stop it unitl I am off the steroids. Any thoughts on this?

    | Reply Posted 6 years, 9 months ago
    • Hi Donna,

      Thanks very much for your comment. Sorry to hear you’re relapsing at the moment, hope it clears up soon. The general consensus over here is that LDN should be stopped whilst taking steroids, and I’ve always followed this and had no ill effects as it’s only a few weeks off of LDN. Different people say different things, but I’d go with what your healthcare team suggests if they know enough about LDN.

      Take care and hope everything goes OK and the relapse goes soon 🙂

      J

      | Reply Posted 6 years, 9 months ago
  7. * Denise obrien says:

    hi there i hope its ok to post. Im in bad shape right now. Was diagnosed 4 weeks ago and not taking it well at all. I had a baby 12 weeks ago and this inability to walk properly has been going on since i was 7 months pregnant. I had a 3 day course of steroids 3 weeks ago and no improvemet at all yet apart from numb hand seems ok now. Im scared ill never walk again. I cant care for my baby and feel like giving up. Can they really work now? I feel like ive waited forever. Surely they should have improved a bit in 3 weeks. I have a toddler too and i just sit around. Please advise me. Im terrified. Denise

    | Reply Posted 6 years, 3 months ago
    • Hi Denise, I’m so sorry to hear you’re having such a tough time just now. Everyone’s experience of MS is different and it affects everyone in different ways, so I can’t really advise you too much. The steroids can take a few weeks to take effect, or it may be that you require more than one course of steroids to completely reduce the inflammation of the relapse. The best thing you can do is talk to your neurologist or MS nurse as soon as possible about your concerns and they should be able to help you and explain more. I’m sorry that I couldn’t help much. I hope everything works out for you. If you need to chat, feel free to contact me. J x

      | Reply Posted 6 years, 3 months ago
  8. * melanie says:

    I am due to start 500 mg of methylprednisolone tomorrow and am very worried out the side effects and their ability to help my symptoms. I was diagnosed 13 years ago and the neuro said at the beginning of october that I now have secondary progressive (i havent seen him for 7 years!!) I feel I have missed the boat for DMD’s but they are trying me on 500 mg for 5 days and backed up with lansprazole 30 mg – I am scared as I am already in a very low mood and worry about the side effects and the mood swings on the leaflet. I gave up work in August and just feel its all getting so I cant do anything. I have a 6 year old son and am worried out him too. I will keep you posted but any advice? Melanie

    | Reply Posted 5 years, 12 months ago
    • Hi Melanie,

      I’m so sorry to hear you’re going through such a rough time just now. I’ve had orals steroids once and they make you feel quite under the weather, but the side effects (if any) are different for everyone. They also taste foul, so pick up some nice tasting sweets or something nice! : )

      It sounds like things are really tough for you just now. The best advice I can probably give is to keep reminding yourself that although the steroids may have some less than pleasant side effects, they’re only temporary and it’s a short term bad in order to reap the possible rewards of the steroids. Just keep an eye on your mood, and speak to your dr if you have any difficulties after stopping the steroid tablets as some people can have withdrawal symptoms (just because the body’s been used to receiving a high dose for 5 days), but I’m sure you’ll be fine : ) The effect, if any, isn’t immediately apparent. Give the steroids some time to work, and if they give you any benefit, you might find this helps your mood, too – sometimes it’s nice to feel you’re kicking MS’s ass and on top again, rather than it always ‘winning’.

      Hope this helps : ) Keep me posted on how you get on.

      J x

      | Reply Posted 5 years, 12 months ago
  9. * Eleda says:

    Thanks for the insight. I was diagnosed only three months ago and am currently having my only really disabling relapse/exacerbation to date. I started solu-medrol two days ago and was hoping for a quick fix! Side effects have not been too bad and treatment itself is basically painless, so I’ll finish the course, but I’m none too thrilled about waiting weeks to be able to type/ use my hands normally again! Sigh. I appreciated reading about your experience.

    | Reply Posted 5 years, 10 months ago
    • It’s always a pain trying to be patient whilst waiting for the steroids to do their work! I always want them to have an effect immediately. It’s usually worth waiting for, though! 🙂 Hope you see a good effect soon.

      | Reply Posted 5 years, 10 months ago


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: