I am currency on a course of infusions for lupus/vasculitis. I have so many questions, & would find it really helpful to hear about other peoples experiences. For example...
How long before you felt the benefits?
How long did the benefits last?
What sort of side effects did you experience?
To name but a few!
Many thanks in advance, Roobarb. X
im on my 4th infusion a week on Thursday,for gca ,pmr ,vasculitis.Ive not felt the benefit yet I must admit,i feel more tired if anything they are reducing steroids down to 30 mg until next visit.I think every one is different in response to treatment.Ive type 1 diabetes and addisons disease so probably a bad comparison as these illnesses play there part ,in it all I think.Try to stay positive and hope it all works out for you.Are you on prednisolone also.?.All the best MICK.....
Thanks mickt. I've got my 6th infusion on Thursday, & on 15 mg oral pred at the moment. It should be more, but I don't tolerate oral meds well. Are you on any other meds at present? Any other side effects like hair loss, bruising?
I'm also feeling very tired, & poorly generally. Although blood tests showing inflam markers coming down. I'm guessing the further you get into the course of treatment, the more the side effects build up. I feel it would be helpful to have some professional & emotional support throughout this kind of treatment. I have a quick visit to my rheumy before each infusion for the go ahead, but she is always running very late & pressed for time.
Btw, I have had tia type symptoms in the past too. With vertigo, limited peripheral vision & numbness on one side of face. An mri at the time showed nothing conclusive & the symptoms did resolve. Although the numbness still comes & goes, & occasionally effects my limbs. How is this being addressed by your GP/rheumy?
Take care of yourself & best wishes. X
Hi roobarb ,they want me to reduce steroids as plays havoc with diabetes ,bit concerned they may rush it,happened before was reduced from 80 down to 20 in 6 weeks had bad double vision last time don't want to be yo yo ing on pred again,its like back to the start im only 50 see you are young to have all this stuff going on also.Tiredness part of autoimmune illness I think,i used to get tired with diabetes but this has taken it to a new level.They are hoping to get me on azathopriene has been mentioned long term and lower dose of steroids ,hope they are right.Ive a good man as my rhuematoligist and he assures me that they are doing all they can for me .I like you hav ebeen off work for 4 months,i do manual work so hoping for return and a lot more energy.Under HR and occ health so see what happens I suppose its beyond out control I suppose.Ive also access to a specialist nurse ,who is brilliant she liases with consultant.If your not happy with your treatment you should seek a second opinion.I think these illnesses have some professionals beat.And as a pro they don't like to be baffled ,it goes against all the training ,they want to make us well andit musy be frustrating for docs as well as us I suppose.My markes were up to 97 crp last week due blood test Monday.All the best to you stay positive as harfd as it may be some times ....
sorry im on insulin humulin s and i ,pred 30mg daily.hydrocortisone ,20mgs ,fludrocortisone,for addisons,omeprezole 40mg day,aspirin and clopidegerol,for blood thinning,poss aps has been muted.vitamin d supplement ,statin nightly 40mg.Bishophonate sat morning for bone protection ,also pill for bladder protection whilst on chemo.,and anti biotic for chemo also.Well you did ask,im a drain on the nhs....good luck to you hinny.
Hi I had approx 10 Cyclophos infusions four years ago for cerebral Vasculitis, so cant remember everything about how long before I felt the benefits as I was so pootly at the time but I guess quite a few months? I was also on 60mg pred for a long time.
You ask about side effects and yes Im afraid hair loss was one of them unfortunately? I quite quickly lost all my hair, which at the time was very long and curly. However after stopping the infusions it did slowly grow back and after a couple of years it is now the same as before! I didnt go down the wig route, just scarves.
I remember feeling very tired and quite poorly and at times couldnt go out, even for blood tests due to my white cell count being much too low.
After finishing the infusions I went onto Mycophenolate which enabled me to come off my steroids completely. I Then went onto Methotrexate and in addition I am now having Rituximab infusions?
Hope all goes well for you
All the best
Sarah
Hi, I have wegeners, and was taking oral cyclophosphamide several years back. Unfortunately, hair loss was one of the side effects and it can also bring on the early onset of menopause.
I have since been taking methotrexate, and prednisoline. I had 4 infusions of rituximab which did help for about 4-5 months after each infusion.
I have since had the complication of apergillis, for which I am now taking posocozanol.
I constantly feel tired, but agree u have to stay positive.
Good luck x
If that is relatively the same agent as Cytoxan, I had only four rounds and although it did put the disease (CNS vasculitis) in a state of "quiescence", it gave me bladder cancer, which I am still at war with. Check into the side effects of the agent they propose for you. For me, it was the lesser of available evils.
Warm wishes,
CanaryDiamond
Did they not attempt to give you bladder protection tablets,im on these as on cyclo treatment going for 4th lot in a week and a half,so sorry you've got problems with the cancer. How long ago did you get treatment?.All the very best mick ..
No. I don't believe I received bladder protection tablets. In all fairness, I can no longer trust my memory on details. I was very ill. I guess I had the stroke at age 48. Prescribed 80 mg.day of steroid (Prednisone). Over one year, I got the hump back, moon face, glowing red rash covering my entire moon face. My beginning weight was 135 pounds and ending weight was 220 pounds (all upper body weight like Popeye). I am 5'.1". When all of this did not arrest the disease, I fired my neurologist. Just about every doctor in that hospital (where I worked) watched my case. My rheumatologist picked up the ball, began the chemo infusions about 6 weeks apart, I think. So...... all in all I am estimating I had the actual infusions when I was 52 and got the dx of bladder cancer 2 1/2 years ago. I am 61 now. So 8 or 9 years? So sorry, story problems were never my thing. Math was never my thing! I'm (obviously) a word person. They did do tests to determine it was the Cytoxan that was the direct cause. It is not in the genetics on either parent. Smoking causes a lot of cancers, but apparently it would be very rare if primary was bladder. Bladder cancer is a well known side effect of Cytoxan. They (and I mean an entire team of doctors from all fields) decided it was the lesser of evils available to me. Considering when I was first diagnosed with CNS vasculitis my neurologist told my husband and I that I had 2 years- at most- to live and to begin to get affairs in order. I cannot tell you how that sentence crumbled my family, particularly my children who were 16 and 19 at that time. The fact is, time goes on and I'm still here. It's a little awkward, frankly. When one gets a dx of death, people generally have the expectation that you will do it and let them get on with their lives. If you keep on living people really don't know what to think or how to treat you. It has it's comical side. Now, i just take the years like a big wave in the ocean. I bob and weave with the motion and take what comes with a grain of salt. I came to the conclusion that it is called "the practice of medicine" because they are still practicing! CNS vasculitis went from being a death sentence 10 years ago to being "livable" today. Only one decade. Think what one more decade will bring.
Warm wishes and plenty of smiles, Mickt
Canary
Really sorry to hear about the bladder cancer CanaryDiamond. As if you haven't had enough to deal with!
hi I've just had my last dose of Cycolphosamide and have experienced no benefits I had loads of debilitating symptoms that seemed to be sorted in hospital before starting on the chemo tiredness seems to be the main problem now but I get 250 mg of steroids with the chemo which seems to screw you with highs and lows for a couple of days after the treatment which is a bit of a strain on life in general . But my wife keeps me in check and I think I would be in a very sorry place without her so stay close to people who are there and tell them everything good luck
I know what you mean about the highs & lows from the steroids infusion with the cyclo, Scotland. The rheumy changed it to mythyl pred last time & that seemed to be a lot worse. I hope she will change it back for this last infusion.
I've been told the benefits can take a few months in some cases, so fingers crossed for you. X
I had 6 high dose Cyclophosphamide pulses, the first one oral, the rest IV infusion. This was for my cerebral vasculitis. They did not work for me I'm afraid, and it was very much a failed treatment.
The cyclo gave me violent nausea and vomiting. On one occasion I was sick 20 times over 12 hours. 2 days after each pulse was usually the worst.
It also made my hair thin dramatically. And I was very weak from it. It would typically take me about a week to recover from each treatment, and then it would be almost time for the next one.
My hair started to regrow about 3 months after the final infusion.
Thanks viv, I am sorry the cyclo didn't help you. I have been warned this might be the case too. I suppose it's a case of trail & error with any drug, but a lot to go through through with this one in particular. Did you eventually find another medication that was more successful?
Afraid I haven't yet. I've tried many many different things over the years. But I'm now possibly going onto a biologic (tho probably not Rituximab) that might help. Just have to rationalise my drugs at the moment. I am currently on 3 different immunosuppressive drugs simultaneously, in addition to steroids, and the biologic could wipe out my immune system, so the rheumatologist wants me off one of them. Though, ha, as my husband said, I was also on that cocktail throughout Cyclophosphamide, so maybe my immune system isn't going anywhere 
Wow, it sounds like your immune system is in major overdrive! It's strange to think that the very thing that protects us, can turn against us like this. I used to get coughs & colds constantly until the lupus/vasculitis kicked in, & I haven't had one for years now. I thought this might change once the cyclo kicked in & my immune system was damped down, but nothing yet. Still there's time yet.
I had 5 cyclo iv infusions and then they stopped them cos they found traces of blood in urine but everything seems ok now according to urology tests. No other side effects. Didn't feel any different after it.
I had 10 cyclo infusions other than feeling tired and a hangover feeling the next day I had no side effects , by the time I got half way these symptoms disappeared . By the time i got to the 9th my consultants discovered it hadn't worked so then had a course of rituximab . Hopefully this with the combination of drugs will work .
Thanks Dog house. How often do yo have the ritux?
Hello Roobarb, I had 1 infusion a week for 4 weeks it finished 4 weeks ago. Luckily I didn't get any side effects from the rituximab. I am now taking azathioprin and they did make me feel, sick for a few days when I increased the dosage .
I am going for my 4th cyclo in 2wks tomorrow at moment I feel ok still got spots on my feet but not so fierce
Had 12 infusions first time round, and 3 so far second time round. 1g cyclosphosphamide and 1.5g methyl prednisolone (and 600mg Mesna). Can't sleep the night of the infusion and feel very sick and weary the following few days.
My bladder is good, I've kept my hair.
I had seven cyclo infusions, which suppressed my WG. They made me quite weary the next day, but I didn't have any major side effects, apart from sweating a lot. I was given anti-sickness tablets, which I only took for 24-36 hours. I didn't lose my hair, but it did thin. I put on weight from the pred but have lost some since it was reduced. Pred also played havoc with my sleep patterns.
Azathioprine was was then tried, but stopped because it adversely affected my liver. I'm now on Rituximab.
Thanks suffolkgirl. How often do you have the rixut?
I had two infusions of Rituximab, two weeks apart, in July. I'm due another one in six months time ( January).
My first cyclo session was a big success, and within a few days I felt better than I had for months. Went off to the second with high hopes....but 24 hours later I was covered in a hot, red rash from top to toe. Even with lots of antihistamine, it was still quite spectacular a week later, so I had to stop and go onto something else. Just two sessions, after several months of methotrexate, made my hair go thin and dry etc. I was prepared to go on and try a third session, but doctors not happy at the idea.
Gosh that sounds like a scary reaction, BronteM. No wonder the docs weren't happy. Did you find another medication for the vasculitis which suited you better?
Yes, doing much better on rituximab. Thank goodness, as the methotrexate did more harm than good!
Sorry to hear about the metha. Do you mind me asking how it effected you? Rheumy is planning injections as my maintenance therapy, as I can't tolerate oral meds.
My ex-rheumy didn't believe in the injections and insisted that the tablets were the only option. The most obvious problem from my point of view was summed up by my next consultant as "blisters and sores at both ends of your digestive tract, probably means that they are there in the middle too"!
The other problems were that my kidney markers were declining fast, that the drug didn't seem to be helping with the vasculitis very much, and that I was pretty confused mentally. I don't remember much of last summer! But I have a neighbour who is taking methotrexate for his RA and he thinks it is a wonder drug that has changed his life entirely for the better. We are all so different in the way that we react!
The last infusion of 6 cyclo has been the only one that has knocked me out leaving me almost bedridden with no energy....
I was diagnose last year with cns Vasculitus. Got finished 12 cyclophosphamide cycles with cortisone and Messna to protect my bladder (struggle with kidney stones)Unfortunately the last MRI showed more lessions and bigger ones. Waiting for doc to decide what to do next... My body wants to take a vacation...
Dear roobarb,
I have just answered another question, about cyclophosamide, on another Post. My answer will be the same.
AndrewT
Burden of Medicines
Can you tell me your experiences of small/medium cell vasculitis?please
Azathioprine and MPA
Expenses for fuel ?
