I have been feeling terrible for the last week. I had Tysabri last Monday and felt bad for the first four days, as I always do, but instead of feeling better after that, I started feeling much worse. My walking is terrible and I’ve got horrible bladder urgency (not frequency though, so I’m assuming no uti). I have some high dose steroids (500mg a day for five days) I had forced on me in December. I didn’t need them then so they’ve sat in my cupboard since. I took the first dose this morning, after no medical advice whatsoever. That’s bad isn’t it? I should jump through the hoops, shouldn’t I? After one dose, I feel much more as if I could make a GP appointment (not easy here, as in many places) and I guess GPs will prescribe high dose steroids. But even as I write this, I know I won’t do it. That’s because there are only three things that can happen if I see my GP. He might say what I’m doing is fine. He might say I need to see someone who’s more of an expert. He might say I’m just wrong to take the steroids. The last one would be the only one that would matter and I think the chances of it are vanishingly small. I am confessing to the sins of self-diagnosis and serious self-medication. Could any of you give me absolution?
Absolutely! I know what a relapse feels like, I’ve had enough of them. So I keep a dose of steroids in the house so I can get started on them straight away without having to waste a few days waiting for a GP appointment. I do the same with antibiotics for a UTI. Makes perfect sense to me. I do make that appointment and let the GP know what I’ve done but they’ve never complained yet… Get well soon
Thank you, I feel much better about it (I love this forum). Just out of interest, what do you do to get the ‘just in case’ steroids and antibiotics?
My surgery has a system where you can request a repeat prescription and pick it up a couple of days later. I always did this with the steroids as I assured them I wouldn’t take them too often and they are OK with that.
The antibiotics is quite a recent one as I’m new to the delights of UTIs, but presumably they’re happy that I know what I’m doing.
Actually, I just had a look at the steroids and it’s been long enough since I last had any that they are out of date. So do I tempt fate and request some more or leave it? Decisions, decisons!!
Just to add, the antibiotics I have start to work in less than two hours so I need to be able to take them ASAP, not have to go through the hassle of getting a rare emergency appointment, mess about with a sample at the surgery (I have MS AND a UTI, do they really think I’m going to have anything left with which to provide a sample? Really?) then find a chemist etc etc… Much better to have some on standby.
Hi there, I had a pesudo relapse not long ago with UTI, urinary urgency and frequency plus a sore throat for two days. I have just purchased a urine sample test with sticks. My GP surgery’s process is so slow. I went for a urine test on day one of relapse. Nurse said there were some cells in sample so it was sent off to lab. I got a text saying results are back of urine test but that was 7 days later. The GP phoned me with the results and offered me antibiotics. I was on the road to recovery then but decided to take the antibiotics still. The pharmacist said this would help ensure the infection wouldn’t return. He also said I could just keep the antibiotics as a back up at home instead of taking them.
Wow, I’m amazed you can keep a supply of steroids & antibiotics. My neuro & GP wouldn’t do that, and to be honest I agree with them. I guess you’ve nearly finished them by now, but steroids are a powerful drug, and completely suppress your immune system. If you happened to have any kind of infection at the time, you’ll be unable to fight it. So my neuro will always do a quick test first before starting me on them, to make sure I’m infection free. I would strongly recommend you don’t take any steroids without getting yourself check first (just a quick dip-test on a urine smple is all they need to do, so only takes 5 minutes).
And taking antibiotics without having a urine sample sent off to the lab can also cause problems down the line. Not all antibiotics work on any UTI. So if you take a course of antibiotics without them being the right ones, for a start they won’t kill off the bug, and you only end up helping the bacteria to become even more resistant to the antibiotics. And antibiotic-resistant bacteria is something we could really do without! I’ve had plenty of UTIs in my time and know how hideous they can make us feel, but I will still always wait 2 or 3 days for the results to come back to make sure I’m getting the right drugs.
(Sorry to be the doom & gloom merchant!)
I see what you mean Dan but I have had steroids countless times over the last 15 years and I know my own MS, so I know better than anyone when to take them and what will happen.
And as for the antibiotics, I also know the symptoms and the ones I have are for UTIs so why would I wait 3 days and risk a relapse? I know about resistant bacteria but I can’t risk 3 needless days of pain followed by time off work relying on other people when the sensible thing to do is get straight on medication.
I know you mean about knowing your MS, and when you need steroids - after my 12 years with MS, I’m exactly the same. My note of caution was just about the possibility of having a hidden infection at the same time, which you then wouldn’t be able to fight off. At the very least it will cancel out the positive effects of the steroids (this has happened to me before), but could also put your health at greater risk.
And with the antibiotics, I’ve had more than my share of them (I’ve got a b*gger at the moment!), and have had relapses caused by them, so I always want to get the drugs as soon as possible. But I’ve had so many, and so many courses of drugs (not always the right one), that I’m also at the point now where the UTIs I get are resistant to almost all antibiotics. The specialists have told me that takng the wrong antibiotics will only make things worse. It’s a worrying situation to be in and I wouldn’t want anyone else to end up like me.
I really hope you get the benefits you need from the drugs and that you stay relapse free; I just thought it worth saying that there are possible consequences down the line.
Take care (and keep cool in this heat!)
Just out of interest on this, I finished the steroids last Friday. My bladder control is better than it was - I was having frequency and urgency by the time I was properly into what I’m pretty sure was a relapse. I was also falling over every day - I have the bruises to prove it but didn’t break anything. I haven’t fallen for the last couple of days and am generally feeling pretty much the same as I did before I started the relapse.
Dan, I’m happy that you can access a neuro and tests so quickly. That isn’t how it is for me - in a world where I could have seen a neuro, been tested for a bladder infection and given the steroids straight away, that is what I would have done. I live in a much more imperfect world and my experience, this time, says I did the right thing, this time.
I’m glad to know you were right to take the steroids, I hope the relapse continues to resolve. Just FYI, I’ve had an antibiotic on my repeat prescription list for a few years now. I’ve self prescribed it when I’ve self tested to see if there’s an infection. I also phone my doctor to get a call back and a prescription on steroids although that’s not on my repeat list. I think I’d be reluctant to take steroids without dipping urine because if you do have an infection, the steroids could make it much much worse. Actually I’ve been more cautious about testing for UTI than the GP. If you do a google search on urinalysis, you can get test strips. What you’re looking for is leucocytes, protein and nitrites. If urine is positive for any of these it’s an infection. In that case, I get the surgery to retest and start antibiotics. My repeat prescription has just been changed to a different one as the bugs change over time. I keep telling the doctors and nurses that I’m practically a doctor these days …
Thanks that is helpful about what to look for with the urinalysis strips. I knew it was protien but not the other two. I think you have to become a researcher in a way on MS to manage your condition.
It’s quite disappointing as I went through a few infections and went to my GP and also A&E once. No one said to me what I have may be a pesudo relapse and best to do a UTI test to check for infection then treat with antibiotics. One time I went to see the GP she said I may have fluid on the ear as my ear was vibrating after a period of pulsating. A week later I got a horrendous hemi-facial spasm that was really upsetting. I looked online to see what fluid on the ear is and it says ear infection with effusion.
Founds this paragraph on the Barts MS Blog:
The more infections you have, in particular severe infections, the more likely it is your MS will progress. Therefore if you have recurrent bladder infections you should try and prevent them occurring. How do you do this? Drink lots of liquids; flushing the bladder reduces infection rates. Also acidifying your urine by drinking cranberry juice or citric acid (citrasoda or lemonade) also helps.
I knew someone who convinced her GP to give her a script for steroids so she had some as a precaution when on holiday on the continent.
You know your own MS as well as any GP, so if you know you need something, the answer is fairly obvious …
So "Bless you my child, you acted with a good intention - go forth and sin, sorry, self medicate, no more.
As for UTIs.
I wanted a quick check, nipped into the surgery to collect a sample phial and the receptionist told me it would be 3-5 days for the result as it had to go to the nearest District Hospital for testing. Knowing that this was wrong, I took the sample in just before lunch, and a different receptionist said “Ring after 2” (you see, I knew that testing was done by one of the nurses over lunch). Note here that the surgery does not ask why you want a test - it eliminates so much that it really does save valuable time.
I hope that the steroids are doing a good job for you. All other things being equal, it is a good idea to take those kind of very strong drugs (and at those doses they really are strong) under medical supervision - as others have said, they aren’t testing your blood pressure/temperature/blood sugar etc for fun - but all things aren’t always equal, are they? Life’s a messy business, as I dare say we have all noticed ourselves… Anyway, I hope that you are starting to feel a lot better.
Feeling a whole lot better actually - finished the steroids a week ago, and I now have control of my bladder again (just wearing one of those little one drop pads today), haven’t fallen over for four days and I can turn over in bed without a problem now.
I’m going to talk to my neuro when I see him in October about whether I can have a some more high dose steroids, just in case. If he says yes, and I get to the point of needing them again, I will probably get one of my family to take a urine sample to the GP, just to be one the safe side. Does this count as sinning no more? It’s as close as I’m likely to get.
Do you get a steroid ‘crash’ ( withdrawal) after a five day 500mg course of steroids ?
I finished a 14 day 50mg course last week and tapered down to 10 mg over a week, then stopped on Wednesday. Still ‘crashing’!
No steroid crash with a short course of high dose steroids - your body doesn’t stop producing them that quickly.
Just for info, two weeks after finishing the steroids, my bladder control is very good - almost like a normal person’s. My walking is terrible however - worse than before I started on the Fampyra (that I’ve been taking since Oct 2012 or was it 2011?).