Please help me

[Twin7]

Hi. Nobody said this was going to be so hard. I feel like I am loosing my mind. Forgetting to do things that I should know. Cyclo drip yesterday was not the answer I was looking for. It’s got to be the prednisone that is the issue, right as I’m on so much 60 mg. Tremours and memory loss seem to be worst of it not to mention the insomnia. Any ideas? Has anyone experienced any of these? Please help me I’m only 52 and single

[Hidden]

It’s 100% the cyclo. I had a nightmare with it back in jan and feb. The stuff is so toxic. Too many side affects, if your body can’t tolerate it your body will tell you. Speak to Rhumatology asap.

[Twin7 in reply to Hidden]

Omg thank you so much! I’m so grateful that I joined this group.

[Hidden in reply to Twin7]

Don’t read to much on here, it’s bloody depressing 🙈🙈

[Twin7 in reply to Hidden]

Depressing or not it’s all I can do

[MIK65]

Brain fog is definitely an issue but for me it has improved over time. It will very much depend on your combination of drugs but the Cyclophosphamide was definitely a factor for me. The prednisolone will hopefully be reduced over time and things will hopefully settle down for you.

[GinnyMa]

I have no experience with the cyclo-drip. But I have Vasculitis and had Truxima infusions and high doses of prednisone at 60 mg. Prednisone brain I call it. After taking the prednisone in the morning I kept away from my checkbook or anything important for several hours, as I could not function clearly. Also sleeplessness occurs with prednisone at that level.

[Twin7 in reply to GinnyMa]

Wish someone had warned me. Coping is hard especially as I can’t seem to function with this hitting me so I can’t even remember my own name. I appreciate your kindness.

[Grizzly-bear]

I am 32 and when I was on high doses of pred I got really bad tremors, I couldn’t drive because of it, or hold a pen etc. I also got the brain fog which I put down to the pred too, but I did have a dose of cyc and also two doses of rituximab. I’m still loaded with a lot of meds each day so difficult to tell what’s doing what. My tremors have lessened since I dropped down in pred dosage.

If you feel like cyc isn’t right for you, as others have said, there are other options.

[Twin7 in reply to Grizzly-bear]

Thank you it means a lot that you took time to help. It’s hard to know what to expect.

[Grizzly-bear in reply to Twin7]

Keep messaging on here as much as you need to, there will always be someone to respond. It can be very isolating going through vasculitis diagnosis and treatment.

[Twin7 in reply to Grizzly-bear]

Thank you it is nice to know I’m not alone. Especially with little to no guidance from unknown doctors.

[MarksPoint in reply to Twin7]

I was on 60mg Pred for GCA and about a month in I changed into a completely different person. I shook all the time - could hardly type for making mistakes, dropped most things I picked up breaking 20 or so cups and glasses alone. My memory was gone, along with the pain from the GCA so that was one positive and one big negative. I could no longer sleep.....so I took liquid melatonin every night plus every 4th night a Valium....I did not want to get hooked on Valium but I needed 8hrs sleep every few nights. The Melatonin gave me about 5 hours. There were numerous other weird things that happened and I found this site and also the FB site for GCA/PMR invaluable. They helped me come to terms with all the s**t the illness and the medication causes. I am now 8 months in and down to 6mg and have lost most of my hair..... but all of the other horrors are gradually abating. You are doing the best thing you can by communicating with others who have taken this journey. You are not alone even though at times you feel you are, there is always someone here who will help you through a bad day. Stay strong...you will come through xxx

[Twin7 in reply to MarksPoint]

Wholly now I’m really terrified. Coming to terms slowly. I guess with systemic anca vasculitis the prognosis is long and hard. Was acutely sick in April which led to diagnosis..in June

[zoe69 Administrator Volunteer Vasculitis UK]

It is quite overwhelming at the beginning. Brain fog is common and many of us have experienced it. Mine decreased a lot when I got to medical remission. I still get episodes, but they are not as bad as when my vasculitis was active.

Insomnia is a side effect from the high dose of steroids. Unfortunately steroids are a life saving medication that has a lot of side effects.

Give the treatment some time to work. Was that your first infusion?

[eh66]

In my case the consultant explained that he gave me Rituximab and cyclophosphamide together so we could give them both in lower doses. I found it was the Preds that gave me insomnia. I would also bare in mind that these drugs are not a magic bullet that immediately fixes the condition, they take time to impact the immune system and why you have multiple transfusions. This unfortunately is a journey that is with everyone for life. Good luck.

[Hairbraid]

I get steroid insomnia my nurse said a lot get it and your on a high dose can never sleep when in on it take care then I’ve had bad sleep for years with ra and pain my memory dreadful xxxx

[EGPAGuy]

Hi Twin. Fear not...the cyclo is an acute treatment and going forward you will start reducing the pred and everything will improve. I started on high dose pred..now down to 5 with biologics. The hospitals treat the vasculitis in the context of protecting spread to vital organs and then its a case of reducing steroids. Sadly in my experience its the steroids that keep you awake so take them in morning to give yourself a chance of sleep - I still wake up and bounce around at 430 am which delights my wife 😬. Brain fog is common and that has improved for me but still have some tremors... you kinda get used to it. Wishing you the best. Lev

[Mooka]

They call it brain fog. You are on a very large dose of prednisone and it can affect you in a lot of ways. It will improve as you reduce your dose. It is probably also responsible for the chills you said you are experiencing. It’s 10 years since I had cyclophosphamide so I can’t remember all the side effects. Have you thought about keeping a diary of your systems so that you can see if there’s a pattern? It will also let you focus on important things when you see your doctor. Prednisone is well known for affecting sleep that’s why you should take it first thing in the morning. If you’ve got the munchies try to keep some low calorie snacks in rather than the stuff you will crave. 🤗🤗

[Oldharry]

Prednisolone can effect people in different ways. I was put on it when I as 13 (Previously called Triamsinolone) and took it for nearly 30 years for Asthma before they got me off it. For me it worked well but it does have side effects. I developed ANCA Vasculitus and was put on 60 mg again ( plus Rituximab ) 2 years ago. I'm now on 5 mgs and still trying to reduce.Yes it does effect your sleep when on high doses -it will get better as you begin to reduce. Just stay positive. Keep fighting -that's my motto.

[Hidden]

Hi my heart went out to you I’m so sorry for what your going through . If you are interested look at Earthing moving you can view it on you tube.There is a book by Clinton Ober

My tool kit for myself reiki , turmeric, fresh pineapple juice , walking , meditation, earthing sheet , to lift brain fog broccoli sprout capsules . I have used both allopathic medicine and complimentary therapies and got my life back . If there is anything I can do to help please feel free to ask anytime . I hope you feel better soon ❤️‍🩹

[Twin7 in reply to Hidden]

Thank you that is very kind of you. Had rough couple of days and feeling a bit down. Hard to fill my days as used to working all day with little ones.

[Hidden in reply to Twin7]

It’s horrible if you’ve been a busy person ,I remember it well . You just want your life back ! Sending hugs and love ❤️ hope you turn a corner soon x

[GPAC]

Hello Twin7, yes treating GPA is tough, but things will get better soon. Prednisone in particular is notorious for its side effects, but these too will get much better as the dosage is reduced, and there is a slow and fast tapper protocol which you can ask you doctor about. Fast is almost equal in effectiveness as slow with far fewer side-effects and the two methods were part of the PEXIVAS trial which your doc should know about.Also, if you would like to connect with another female GPA patient in BC I can connect the two of you, and you are always welcome to attend the mostly Canadian GPA/MPA ZOOM-in on August 6th, email me at [e-mail] and I will get things rolling for you.

And, since you now have some experience with Prednisone there is a mostly Canadian study on prednisone which you can also do, and Vasculitis Canada Foundation would really like your input, the study survey is located here: vasculitis.ca/?p=1608

Good luck, better times are ahead!

[Twin7 in reply to GPAC]

Please connect me with bc person.My contact info is [e-mail]

[GPAC in reply to Twin7]

Done, and happy to help in any way! My email was sent from contact....