Very Sore Eyes after 6 week BCG plus aches/pains

Hi Rosemary

Thanks for your reply. I have emailed our consultant today with Steve's symptoms. Unfortunately, like most medics, he is extremely busy and you can NEVER get to speak to consultants unless you are paying - which we are not, but hey ho, I await his reply.

Steve rang from Spain today to say he had been up all night in agony. Both knees are now affected and he can hardly walk. His eyes are still red raw too. The trouble is, Stevbe is on anti-depressants for clinical depression which can be triggered by lack of sleep - so we could get into an ongoing problem here. Are there medications out there that can successfully treat arthritic conditions with the exception of Ibprofen?

The nightmare continues .....

Ceri
x

Ceri,

I neglected to respond to this question.
When I E Mailed Dr. Lamm about my arthritis and whether or not the reaction was a good indication of an immunological response, this was how it went....

Rosemary

Hi Ceri,

I am battling with the same question about continuing with BCG treatments because of my severe arthritic like reaction a week after my 9th instillation.  If my symptoms get worse, I do not know how I can continue to work.  I can hardly buckle my seatbelt or zip my pants.  You never realize how much you need your right thumb until you need it.  I also have a severe, resistant yeast infection.  All of this is a rare reaction.

When my GP decided that my reaction was BCG related, he admonished me to continue with the treatments and deal with the symptoms.  I feel exactly like your husband feels.  But, I do not know the answer.  

Perhaps you could E Mail Dr. Lamm, or find an answer by searching his web site. He is a noted BCG expert in the field and has done much research on our behalf.   And, he has always been so kind to reply to our queries..

www.bcgoncology.com/

Please let me know what you decide.  It would help me to think this thing through for myself.

Your husband is lucky to have you.

Warmest regards,
Rosemary

Hi Rosemary

Thanks for your feedback. It sounds very much like Steve has Reiters Syndrome. I looked it up on the NHS website and he has virtually all of the symptoms, too much of a coincidence for him NOT to have it. I wonder what this means though. Do you think he will no longer be able to continue with BCG? Although, now he already has this syndrome, continuing with BCG would make no differnece to his symptoms - as he has it already, so to speak. I hope he can continue. It may be a good sign that his immune system is in overdrive - having a good response on his bladder maybe?? He left for Spain today for a week on business - saying 'if the cancer doesn't kill me, the BCG will' - laughing as he said it.

I will appreciated your reply as we have been going round in circles wondering what was wrong with him.

Kind Regards

Ceri

Ceri,

I ran across this symptom (conjunctivitis)  when researching my own reactive arthritis response to BCG.
From what I have read about it, this symptom is pretty rare but is well documented.

At least your Medical team validates the reaction to BCG.  This is good.

There is something called REITERS' SYNDROME which is a documented reaction to BCG.  It usually includes 3 symptoms 1. conjunctivitis   2. joint inflammation   3. urethritis

It sounds like your husband has 2 out of 3

Hope he feels better soon. Please keep us posted.

Warm regards,
Rosemary

Hi Folks

Steve ha sjust completed his six week BCG course - a week ago - and has had an awful eye problem ever since. We just thought he had conjunctivitis but it appears it is BCG related. He is really suffering, his eyes are all puffed up, red and swollen and his vision is blurred. The docs have given him drops but have said he will just have to wait for them to heal on their own really. Also, he has been suffering from shooting pains in his spine and knees. All this to contend with, along with the normal cystitis type of symptoms. I really feel sorry for him as he hoped to have a symptom free few weeks before his next op on March 5th. Anyone else suffered from these symtpoms? I was told by the Urology Nurse today that another patient, the same age as Steve (45), had identical symptoms first time round, but didn't suffer a recurrence with further maintenance BCG. We can only hope ....

Ceri