Hose me down!

[PMR2011]

Some of you may recall my post about continued hoarseness. Saw my GP today. He thinks it’s ongoing vocal cord inflammation post viral upper respiratory infection (5 weeks ago!). Which, okay very likely...but he decided I needed 5 days of 20mg Prednisone! Having just got to club zero in February ( am on Actemra) I wanted to cry! Intellectually I know what it’s for but emotionally I just don’t want to do it!

[Hidden]

Its sounds a lot of pred. But i suppose he is trying to head off a flare at the pass. My dad had severe asthma and emphysema & COPD, and because of his inhaler and nebuliser had loose vocal chords. I know its not the same as PMR but he had repeat and chronic infections, in and out of hospital. The pred routine 7,6,5,4,3,1 had worked for years as well a visit or two to speech therapists.

In fact i think he had PMR as he went to see doc with arm and shoulder pain and fatigue. Dr gave him steroids for a month and said its a good job you didn't leave it as it can get serious and you can loose your sight. I never knew with dad. Deaf and dying of COPD. He didn't last much longer.

[Mishycake]

I have chronic hoarseness but it comes from having bamboo nodules on my vocal cords... and scarring. From coughing

[DorsetLady PMRGCAuk volunteer]

Five days at 20mg will be okay. I had to do that a little while ago when my inflammation was high and GP initially thought return of GCA - fortunately it’s wasn’t - it was after effects of 2 operations.

[PMRpro Ambassador]

Not for PMR or to prevent a flare - just to reduce the inflammation causing the throat problem. It is a common approach with chest infections these days - I assume to reduce the use of antibiotics.

[Hidden]

I am sure it will be ok,its the thought of taking pred when you are at zero hope it will help clear it up.I saw you are on Actemra,are you ok with it?I just had 3rd Infusion had some ups and downs,but no change in pain.xx

[PMR2011 in reply to Hidden]

Yes, I’ve been on Actemra for more than a year. It has worked really well for me. No side effects other than a mild headache which attention to staying hydrated takes care of. I am on the weekly injections not the monthly infusion.

[Hidden in reply to PMR2011]

I am so glad to hear Actemra has helped you,yes i olso have the headache for first few days and runny nose.I am hoping it will start to help me real soon.xx

[PMR2011 in reply to Hidden]

I am curious why you are getting the infusion and not weekly injections which is what is recommended for GCA?

[Hidden in reply to PMR2011]

I do not have GCA, it is PMR and i have lots of inflammation in my joints,but medicine they have tried have made me ill.I don't think they use injections of Actemra in Scotland only Infusion. xx

[SusanEleven]

I wasn’t in Club Zero but my Ear Nose Throat doctor put me on a 10-day Prednisone burst for a sinus issue that would not resolve after months and months. It was 2 days each of 30/25/20/15/10. At the time I was worried that this would set back my taper where I was finally at 5mg for my pmr. Members of this group reassured me it would be fine and it was. At the end of the 10 days I went right back to my 5mg no problem. Sinus problem was resolved. I’m sure it’s hard to accept the need to do this after making it to zero. Sending you best wishes. You can do this!

[PMR2011 in reply to SusanEleven]

Thanks much for helping reassure me. It does feel like a setback doesn’t it? It would be nice if my voice stopped sounding like a whiny 12 year old!

[StillBreathin in reply to SusanEleven]

Thanks for the info...I'm in the midst of a sinus infection now, they want to do the burst, and I was worried about it, but sounds like I should be fine!

[SusanEleven in reply to StillBreathin]

The idea initially scared me because 10 mg was the highest dose I’d ever had for my PMR, and even that dose had me organizing my kitchen cabinets for hours on end.

I didn’t get a lot of sleep the first few days of the burst (but lots of house cleaning ha ha), but it turned out well for me.

[StillBreathin in reply to SusanEleven]

That is good.... nothing wrong with getting some extra things done! I started at 20mg in Oct 2018, and am currently down to 13mg... I was trying to go down to 12mg when I got bronchitis, which I was able to get rid of but ended up with this sinus infection that won't go away, and to make it worse, I flew while this was going on so my right ear is still plugged... the doctors felt that a burst would clear my ear up and with antibiotics will get this sinus infection knocked out. It is so hard for me to taper down, that it really worried me to do this blast, so it was great to hear you had that same concerns and it all went well! Hope it works for me too!

[whitefishbay]

don't do it. You are the boss.

[Blearyeyed]

I can understand how scary it must feel being put back on Pred for awhile , especially if you have got into Club Zero , you feel that the big dose could undo the good work and force you into a long tapering period again.

We forget , when we have been on steroids for a long time for one thing that those same steroids are regularly used in high short term doses for other things as well.

As , the others have said , a short Pred course for throat inflammation will deal with a very different localized infection , and rather than putting you back on the flare then tapering hamster wheel stop a flare and help you to jump straight back in Club Zero with Actemra again .

Take care and let us know how it goes , bee x

[PMR2011]

Thanks, appreciate the words of support. Maybe not so scary after all...