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Posted by wmmbb in Personal Experience.

Prednisone did not work for my kidney condition. Now I will be taking Cyclophosphamide as from tomorrow.

Cyclophophamide is not like an asprin; it is drug used for some forms of chemotherapy.
The tablets themselves, with the commercial name Cycloblastin, look innocuous. It turns out I am now taking eleven different medications, some requiring multiple tablets for the set dose. Never mind how useful it may be for anybody else, it is important to something of the possible side effects, and with kidney disease it is important to drink water in the right amount.

Long story short, the internet and googling is very useful. I notice that pharmacists actually provide written information and doctors generally do not. I wonder why not, other that I suppose the possible legal implications. I am almost always asked what did the doctor say. I can only give an abbreviated account Рhe said my blood test indicated low level of neurophils (subsequent test show my level is now normal), cyclophosphamide can cause bladder cancer and therefore elimination is important, and that I have a severe case of membranous gromerulonephritis (MGN), which I take the implication to be that I am susceptible to chronic  kidney failure.  The BBC has an description of the symptoms associated with gromerulonephtritis.

Long ago in our consulting relationship with my specialist we have had the conversation, and I acknowledge that he is the expert, since he has a Ph.D in the subject, and should any issue arise he would be happy to consult with his colleagues. Like all relationships it is essence is based on trust. For example, when I see the results, and their is variance (as perhaps one should expect), and see that the prednisone is not working, I accept that it is time to try something else.

The analogy that comes to my mind is with climate science. Causality can be difficult to identify,even following a kidney biopsy. My understanding is that my disease is idiopathic, which is to say there is a causal explanation but it is not apparent. The same label was applied to my enlarged spleen, which was surgically removed. I suspect there is a connection. Looking for an explanation for the spleen led (not as is my habit lead)to the kidneys, otherwise kidney disease is one of those diseases that tends to go below the radar, much like for example elevated blood pressure, also a symptom.

I am very conscious of the fact that I am privileged to the extent that I have “access” to medical care. Geographical distance can be a problem even in a civilized country that does not prescribe treatment on the basis of capacity to pay, or makes payment for medical services conditional on personal wealth. Then, as you might have noticed, the technical language is difficult. So what do the white or red blood cells actually do in a living system? There is a sociological context that shapes thinking, or consciousness, and there are other variables in play such as age. We don’t often reflect, and less of all me, reflect on dominant ideas, such as for example predestination, might affect social outcomes. Few of us are intellectuals but sometimes deep problems are conceptual.

So what are some of the possible side effects of taking cyclophosphamide? Wkipedia, has a very good description of the chemistry of the drug and perhaps a comprehensive summary of the side effects:

Many people taking cyclophosphamide do not have serious side effects. Side-effects include chemotherapy-induced nausea and vomiting (CINV), bone marrow suppression, stomach ache, diarrhea, darkening of the skin/nails, alopecia (hair loss) or thinning of hair, changes in color and texture of the hair, and lethargy. Hemorrhagic cystitis is a frequent complication, but this is prevented by adequate fluid intake and Mesna (sodium 2-mercaptoethane sulfonate). Mesna is a sulfhydryl donor and binds acrolein.
Cyclophosphamide is itself carcinogenic, potentially causing transitional cell carcinoma of the bladder as a long-term complication. It can lower the body’s ability to fight an infection. It can cause temporary or (rarely) permanent sterility.
Other (serious) side effects include:
gross and microscopic hematuria,
unusual decrease in the amount of urine,
mouth sores,
unusual tiredness or weakness,
joint pain,
easy bruising/bleeding,
existing wounds that are slow healing.

(emphasis added)
Here is another summary of the possible side effects.

When you start on a new drug, you start on a new journey. Let’s hope for a happy outcome.




[…] to a more exciting drug, while still on a reduced dose of prednisone. The new medication is cyclophosphamide, a carcinogenic drug used some forms of cancer. Possibly related posts: (automatically […]

2. Col - October 17, 2010

I am hoping this drug is successful for you. Sending good thoughts your way.

wmmbb - October 18, 2010

Thank you very much Colleen. Let me hope that it works and I can get off it quickly without having to go onto something else.

3. Chris - September 17, 2014

It is September 2014 and you are still alive – how about an update on the renal issues? My husband has a similar condition, his doctor has him on Predisone and Cyclophophamine alternating months.

wmmbb - September 17, 2014

Thanks for the comment, Chris. I am seeing my specialist every three months now. In the meantime I am supposed to be taking my medication on a regular basis at two day intervals. I sometimes forget. I now take Azathioprine /Imuran (50mg) which seems to be effective for me. Edema – the swelling I experienced in my ankles and elsewhere is a thing of the past. I take as well spiractin, asasantin and irbesartan.

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