Churg Strauss Syndrome

[Painfree61]

I have been recently diagnosed with this type of facilities and am under treatment through Addenbrookes Hospital at the moment.I a have been reduced it steroid tablets but am concerned about all the side effects from the medications. I have started to get joint and particularly in the knees and elbow. I am taking several medications to combat steroid side effects. Please can anyone advise how you are coping and and any advice on this problem. Thanks

[PMRpro]

If you want info about living with pred at any dose - come over to the PMRGCAuk forum! It is the only option we have for symptom management and many of us don't take medication for some of the claimed side effects either.

Without knowing which side effect of pred concern you it is difficult to say a lot. But one basic rule is to cut your carbohydrate intake drastically (low, not no carb) which should help minimise weight gain, even allow you to lose weightm and reduces the risk of developing steroid-induced diabeted and even reverse a rising Hba1c.

healthunlocked.com/pmrgcauk

[Painfree61 in reply to PMRpro]

Thank you for your reply

[guineapignot]

Good morning . I empathise with you in all you are going thro !! As with all meds their are “ side effects” some of which seem as bad as the symptoms at times!! I was given Methotrexate /prednisolone ... then mycophenolate / pref and more meds to combat the side effects . It got to the stage I could not identify which were “ symptoms of the disease and which were side effects. My gp could not give me a definitive answer ... and so I sought assistance from a herbalist . She prescribed a remedy which has significantly reduced the “ side effects “ of the main meds . I have eliminated the need for those now and it’s helped to reduce my dosage of the drugs for the disease. I feel so much better. The herbalist meds have no side effects. This took a few weeks to have an effect but it has

Definitely improved my life !! I wish you all good things and hope you find a way to improve your condition too.

Regards A

[Painfree61 in reply to guineapignot]

Thanks for your reply

[Paprika60 in reply to guineapignot]

Could you let me know who your herbalist is? The name and website if possible please.

I too had been put on many as you had and got ill from all of them. I am taking a low dosage of prednisolone and have been trying so hard to stop for three years and cannot. So would love to try a herbalist and without recommendation, it is like throwing a dart in the dark.

Many thanks.

[zoe69 Moderator Volunteer Vasculitis UK]

I have GPA vasculitis. I am prednisolone free now, but it took me more than 3 years to get there.

Prednisolone is a life saviour, but has a lot of side effects.

It can affect your bone density so taking tablets for your bones is a must

.

Insomnia and preds are best buddies, but I don't have a practical advice for that (I watched a lot of TV, chatted with other pred victims and baked a lot)

Mood swings...I still admire my family for putting up with me.

Hot flashes and night sweats. My GP prescribed a very low dose of citalopram and that helped.

Moon face. Unavoidable for most people on high prednisolone dose. Hard to ignore, but it went away eventually.

Putting on weigh. Low carbs, very low salt intake, plenty of water and moderate exercise (small walks) can help you not gain too much weigh.

You are under a very good Vasculitis centre. I hope you will soon get to remission and will only need a small dose of prednisolone or none at all.

[Painfree61 in reply to zoe69]

Thanks for your reply

[Paprika60 in reply to zoe69]

I have had insomnia for over 10 years on top of menopause...and last year attended a weekly Cognitive Behaviour Therapy for insomnia for 5 weeks at the Sleep Disorder Clinic at the Guy's, London.

Although it has taken me over 6 months, I am finally sleeping 5 to 6 hours daily. This is a huge improvement as I sometimes slept barely for weeks in the past. I also wear blue light blocking glasses in the evening. It is cumbersome but you get used to it. Valerian tincture also helps when taken before bed. Hope this helps.

[Tbrz]

Hi, sorry to hear your diagnosis, but you are under an excellent team. I think I’ve had every side effect going, like Zoe69, weight gain, tick, dreadful insomnia, tick, moon face, tick, steroid induced diabetes, tick, but ultimately they did save my life. I’m still on 10mg, trying to drop to 9mg a day a week at the moment as I have had an awful time reducing my steroids, experiencing all the side effects that has to offer, so have had to reduce really slowly. I have been on steroids for nearly 4 years, at the height of my condition I was on 120mg intravenously, so I’ve come a long way, but my GPA has been very stubborn, I’m still not quite in remission as it still seems to be bubbling around, although I’m stable, although I suffer with a number of left over issues from the vasculitis. So do try all the tips to counter the prednisone, but remember it’s a drug which helps control this horrible disease and the doctors will want you to ultimately reduce and come off it. Good luck.

[Painfree61 in reply to Tbrz]

Thanks for your reply

[IPS70]

I was on prednisolone for a long term after diagnosis and last three years been on and off in remission. Therefore prenisolone is my bestie.

To help with my joints and some of the side effects, doing exercise 2-3 times a week without pushing myself too much comforts me. I take many short breaks during exercising. Controlling diet is another way to minimise weight gain and other side effects.

[Painfree61 in reply to IPS70]

Thanks for your reply