- Home
- Share
- Forum
- Lupus Forum
- Treatments for lupus
- Immunosuppressive drugs and Lupus
Patients Lupus
Immunosuppressive drugs and Lupus
- 61 views
- 4 times supported
- 6 comments
All comments
robjmckinney
AmbassadorGood advisor
robjmckinney
Ambassador
Last activity on 19/11/2024 at 19:37
Joined in 2015
596 comments posted | 14 in the Lupus Forum
47 of their responses were helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Committed
-
Explorer
-
Evaluator
Microfenulate and a quinine derivative are the two drugs for her Lupus which she is allowed to stop and start depending on her consumption of anti-biotics. So much is wrong with her it is difficult to directly identify side effects as her individual conditions are widespread in their affects. Simply living with one crises to another, do we seek medical help or deal with it ourselves. Since these type of diseases have such widespread affects on the body that could have caused her heart disease etc. Monitoring is the key, she is required to have blood tests every two weeks that she and the doctor can manage the autoimmune and other tablets. Water retention also puts pressure and taking the right amount of tablets to control that raises its head on occasion. But the boils/constipation are her regular issue at this moment.
She has regular blood tests every two weeks to monitor inflammation etc. that allows the GP and herself monitor her condition and the amount of specific drugs needed. She has a little book to record the blood tests that cover around ten different readings and kidney functions.
See the signature
robjmckinney
lupus79
lupus79
Last activity on 31/03/2022 at 08:49
Joined in 2020
I'm currently on hydroxychloroquine, but possibly a candidate for biologics. Any experience on this? Thanks.
robjmckinney
AmbassadorGood advisor
robjmckinney
Ambassador
Last activity on 19/11/2024 at 19:37
Joined in 2015
596 comments posted | 14 in the Lupus Forum
47 of their responses were helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Committed
-
Explorer
-
Evaluator
My wife has took it for 30 years with no side effects but as she has so many other drugs and conditions no further info than that!
See the signature
robjmckinney
eleventwelve
Good advisor
eleventwelve
Last activity on 07/05/2020 at 09:28
Joined in 2016
9 comments posted | 9 in the Lupus Forum
Rewards
-
Good Advisor
-
Contributor
-
Explorer
Hello all, my doctor just put me on cyclophosphamide as my former medications weren't effective anymore. I've just started it not long ago so I don't know if it's working. I've been having quite a lot of nausea and a bit of diarrhoea and I've heard that I may lose some hair. Does anyone have experience with this?
Courtney_J
Community managerGood advisor
Courtney_J
Community manager
Last activity on 13/10/2022 at 16:47
Joined in 2020
1,280 comments posted | 19 in the Lupus Forum
10 of their responses were helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Committed
-
Explorer
-
Evaluator
@eleventwelve Hello eleventwelve, thank you for your comment. I'm sorry you're having those side effects. Maybe some other members can share their experience with cyclophosphamide.
Hello everyone, I hope you're doing well. Have any of you been on immosuppressive medications for your lupus? Have any of you tried cyclophosphamide? What were the side effects? Did it work for you?
@Yvonne1962 @BeverleyAnnemcc @Debrahenden @Aideenof @Susannah16 @Jackleo1 @Marc18 @Julilonpe
Take care,
Courtney
See the signature
Courtney_J, Community Manager, Carenity UK
robjmckinney
AmbassadorGood advisor
robjmckinney
Ambassador
Last activity on 19/11/2024 at 19:37
Joined in 2015
596 comments posted | 14 in the Lupus Forum
47 of their responses were helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Committed
-
Explorer
-
Evaluator
Hi eleventwelve,
I found this online on the side effects ''Side effects of cyclophosphamide include: Hair loss. Nausea. Vomiting. Diarrhea. Mouth sores. Weight loss. Stomach pain''.
Is cyclophosphamide an immunosuppressant?
''Cyclophosphamide is an alkylating agent that prevents cell division by cross-linking DNA strands and decreasing DNA synthesis. It is a cell cycle phase nonspecific agent. Cyclophosphamide also possesses potent immunosuppressive activity''.
So effectively you are taking a Chemotherapy drug which clearly have long and short term effects, have a look online as there are plenty of information on the drug. Although my wife has the Lupus I have had Head and Neck cancer so aware of the short and long term effects of cancer treatment. You might also find more information on this site on such Chemotherapy drugs and their effects in the cancer section that might be useful. Clearly there will be many more people who no doubt direct experience of your drug, good luck!
See the signature
robjmckinney
Give your opinion
Members are also commenting on...
Living with diseases affecting muscles, joints and-or skeleton
Life after a joint replacement: Share your experiences and advice!
Unregistered member
I had a hip replacement 16 months ago due to osteoarthritis. I can honestly say it was the best decision I have ever made. Yes I was not looking forward to everything post op, but I am now 100% mobile and after not being able to walk any distances I now enjoy walking again and I've managed to lose 2.5 stones. Totally pain free and I've had lots of comments about how much happier I look - my face was obviously showing my pain. If you have any questions please ask!
See the best comment
Living with diseases affecting muscles, joints and-or skeleton
Life after a joint replacement: Share your experiences and advice!
Unregistered member
I had a hip replacement 16 months ago due to osteoarthritis. I can honestly say it was the best decision I have ever made. Yes I was not looking forward to everything post op, but I am now 100% mobile and after not being able to walk any distances I now enjoy walking again and I've managed to lose 2.5 stones. Totally pain free and I've had lots of comments about how much happier I look - my face was obviously showing my pain. If you have any questions please ask!
See the best comment
Articles to discover...
03/11/2023 | Testimonial
Lupus: "We didn’t choose lupus, but we CAN choose our journey"
23/08/2023 | Testimonial
Dietitian Tanya helps the Lupus community to reduce their symptoms with diet and healthy living.
10/05/2023 | Advice
14/12/2022 | Testimonial
05/09/2018 | Testimonial
06/02/2019 | Advice
Photo testimonial: Years of diagnostic uncertainty facing Ehlers-Danlos Syndrome
Subscribe
You wish to be notified of new comments
Your subscription has been taken into account
Margarita_k
Community managerGood advisor
Margarita_k
Community manager
Last activity on 07/10/2020 at 11:39
Joined in 2016
1,195 comments posted | 23 in the Lupus Forum
1 of their responses was helpful to members
Rewards
Good Advisor
Contributor
Messenger
Committed
Explorer
Evaluator
What immunosuppressive medecines do you take? Has it been working well for you?
And what about side effects?
Thanks in advance for sharing your thoughts, remember that it can help others!