Hi everyone… I was diagnosed in 2007 with PPMS following some weird experiences with balance etc. I had an MRI and evoked potentials which confirmed that I did have PPMS. However, I was given a 5 day course of steroids and that is it! Apart from a 10mg daily Vesicare Solifenacin tablet to regulate my bladder that’s all I have ever been given. I spoke to my GP as it looked like I had been pushed off the radar and she referred me to a neurologist. Since being registered with this neurologist I have attended Charing Cross Hospital and given IV steroid treatment. I am now taking 60g Prednisolone tapering in six weeks. My GP prescribed this as there was no pharmacist at Charing Cross on Saturday but I really dont know if I should be taking 12 x 5mg tabs all in one go in the morning or whether I should spread them throughout the day… Is there anyone out there who could perhaps help… I keep calling my GP but he has just come back from holiday and I’ve been told by his receptionist that he will call me when he gets the time… I’ve not happy about this as I’ve got a whole load of tablets to take but have no istructions as to when they should be taken. I’d really appreciate if there is anyone who can throw any light on this for me. Thanks so much xxx
Hi Jane
Had IV steroids like you in hospital just before Christmas, then a similar reduction course starting from 60mg. These were scheduled for the first meds round of the morning, i.e. not long after breakfast. Because I was in rather a weak state I used to find that if I took the whole dose in one go I would get pretty spaced and feel unwell for several hours hour or so. So, in agreement with the nurses, I began to take a ‘loading dose’ of 20mg and finish the rest an hour or so later. This was far more comfortable.
My previous experience of steroids 3 years ago I started on 90 mg oral and reduced accordingly, and this time I was at home and feeling fairly well so I didn’t feel any discomfort. I just had the sleepless nights, racing brain and incessant blabber from my mouth!
So I suppose the answer is- take them all in one go unless you find that overpowering, in which case stagger the dose a bit.
Please don’t take my experiences as medical correctness, though! Good luck.
Kev
Hi Jane.
I’ve never had steroids but know from nursing that it’s very unwise to take them later in the day as you don’t be able to sleep as Kev has said, you’ll possibly feel jittery and that your mind is racing. I know we always administered steroids early in the morning but a couple of patients did what Kev suggested and took them at short intervals. Sorry I can’t be of much help.
Cath xx
Hi Jane
I am surprised that you were givej steroids, as far as I am aware they have no effect with ppms, but maybe you were prescribed them for another reason.
Maybe a good idea to have a word with gp or ms nurse if you have one, hope things improve for you.
Pam x
Hello Jane I have SPMS and my MS Nurse prescribed the same steroids, taken over 6 weeks, I found it strange that I was expected to start the 6 week course, by taken 12 tablets a day for the first week,( on top of all the other meds I was on) reducing down to 6 the second week, ect ect until I had finished the course, I even called the Pharmacist just to check the dose was correct. I took the steroids but didn’t find they had any improvement on my MS. This doesn’t mean this happens with everyone, but I was prepared to try anything. Have since seen my neurologist and he has but me on Balconfen with the other meds, but was happy that I had tried the steroids. Anyway good luck, and gave a good Easter. Deborah
[quote=Amazon lady]Hello Jane I have SPMS and my MS Nurse prescribed the same steroids, taken over 6 weeks, I found it strange that I was expected to start the 6 week course, by taken 12 tablets a day for the first week,( on top of all the other meds I was on) reducing down to 6 the second week, ect ect until I had finished the course, I even called the Pharmacist just to check the dose was correct. I took the steroids but didn’t find they had any improvement on my MS. This doesn’t mean this happens with everyone, but I was prepared to try anything. Have since seen my neurologist and he has but me on Balconfen with the other meds, but was happy that I had tried the steroids. Anyway good luck, and gave a good Easter. Deborah
Thanks Deborah. Im getting lots of different comments about this…People saying that you sdnt take any drugs for PPMS… its all a bit strange and I just feel really spaced out… think Id rather carry on without any drugs,there just making me feel really weird… balance has improved a bit but think id rather be wobbly than put up with this strange feeling . Just think I’m going to eat lots of chocolate… Happy Easter to you too 
[quote=“skippysprite”]
Hi Jane
I am surprised that you were givej steroids, as far as I am aware they have no effect with ppms, but maybe you were prescribed them for another reason.
Maybe a good idea to have a word with gp or ms nurse if you have one, hope things improve for you.
Pam x
[/quote] Me too Pam… I thought that there werent any drugs for PPMS…If they carry on making me feel spaced out then I think I want to stop and carry on living with my wobbles!! Got a neuro appointment in a couple of weeks so I’ll see what she has to say about it,
Thanks, Jane x
Hi Pam, I totally agree with you. I thought that PPMS couldnt be treated with steroids… To be honest I’m thinking of stopping taking these as they are making me feel spaced out, Thimk Id rather remain wobbly…still am seeing my neuro soon so I will chat to her about it. I have no other reason to be on steroids…so I think they’re just seeing what my reaction is… I dont like this one bit…I dont even have an MS Nurse who I can talk to…I tried today to call them at Charing Cross but I think they’ve all broken upfor Easter :-)x
Jane
if your GP does not contact you over the weekend why not try a good pharmasist who might be able to advise you. I know when I was on steroids I was very grumpy, so make sure you tell those around you that it is the medication and not you.
R
Pam, I’m sure you’re right. Both times I was given steroids, it was before I was diagnosed. (It took them four years to finally establish that it was MS.)
The steroids were prescribed on a ‘hit and hope’ basis, and I think that the failure of the recent massive IV dose to do anything for me apart from keeping me awake all night, helped to convince them (along with the scans and tests of course) that MS was most likely.
Kev
Hi Kev Yes there is nothing they can give SPMS or PPMS as there are concentrating more on RRMS ( or so my nurse and Neurologist says)but I think they do try everything, which I thank them for, maybe someone may benefit from the steroids.they just try all sorts of drugs to help you carry on as normally as posible,anyway try and keep positive. Happy Easter to everyone. Deborah
Hi Jane, have you a ms nurse that you can call l find there are more helpfull than gps as they deal with ms more on a daily base than gps do. Was there any paperwork in with the tablets that may help.
Hope you get it sorted regards Jan
Jane- I’ve just noticed in one of your early posts that you might consider stopping the steroids. Please don’t, you have to come off them gradually, otherwise you will feel really bad with withdrawal symptons. It does become a lot easier to handle once you’re down to 20 or 30 mg each day
Hi Kev I know that I shouldn’t just stop but to do it gradually. It’s one week exactly today since I had them at Charing Cross.hospital. I didnt take any on Sunday as there was no one available to give me a prescription. Im going to lower my dose gradually. I took 6 x 5mg this morning and will probably do the same tomorrow… thanks for your advice
I was diagnosed in January with PPMS and my neuro said there are no treatments for the PPMS but there are some medications for specific symptoms. I am not on anything at present but I am seeing a physio who has given me some exercises to strengthen my core and improve my balance.
My GP tried steroids when I first went to see him about my symptoms, almost 2 years ago, but they made no difference so we stopped them.
Hi Mitzi
Just wanted to say hello, and welcome to our ‘gang’ a lovely bunch of friendly people.
Pam x
Hi Pam, thanks for the welcome.
Happy Easter everyone xxx
Hello All, This is my first post. I am a mum of a 29 year old diagnosed with PPMS. He was put on a high 5 day course of steroids in August, before his diagnosis and the fact that they didn’t help was a contributing factor to the diagnosis of PPMS, so I too agree with others that steroids are not the answer for people with PPMS. However, I just wanted to add that James’s Neurologist put James straight on to Tysabri. This is an usual approach for PPMS as the drug is intended for RRMS, but his Neurologist was keen to try it to attempt to slow down progression, considering his young age and rather than do nothing at all. I know that the MS Society has recently funded a clinical trial of the drug being used to treat SPMS, but not PPMS so I guess this is an unusual approach.
My understanding of the drug is that it attaches itself to cells and prevents them from passing through the blood / brain barrier which then prevents the myelin coating from being attacked. This is why the drug has had such good results in reducing relapses in RRMS. James’s Neurologist is hoping that the drug will slow down the progession of James’s MS in the same way, and to be honest, I can’t see why it wouldn’t. There is a serious known risk with the drug (PML, which is a potentially fatal brain disease), but in James’s case the risk is low and it’s a risk he’s willing to take until something new comes along.
I hope this is of interest.
Clare x