IC UPDATE

Merry Christmas and Happy Holiday Greetings

A couple of notes….. because i said I’d let you know how it goes…….

I’ve been able to decrease my amitriptyline 100mg to 50mg at bedtime pretty well, I’ve gone slowly over 3 weeks with only some pain in the mornings that don’t need to be medicated. So now I’ll try 25mg plus the PEAORA POLY 500 2-4 TABS Daily to see how that goes.

I read an article in ‘pocket’ last week about studies being done on green lights used with success for migraines and it said studies were started for their use in interstitial cystitis. (IC) Seems pretty simple, just look into the lights for a period of time daily, I just sent for green holiday lights to hang up here to give it a try. Nothing to lose.

I would like to get medical pot but am not a NM resident so don’t think I can unless I become a resident which I would but I have to get my marriage license translated to English to get a drivers license, worth the time and bother? Maybe.

Another thing I learned this week while doing the laundry ( I have a really sad story about that but if I tell you you will think I’m demented already) I met a couple, Eric and Robin Lines, who stay at the RV park close by (where I do laundry). They have formed a company called Silver Solutions. They have a website here, silver@silvermtnsolutions.com that looks very interesting, not sure how it might help IC concerns but I bought a small bottle because silver is used in wound care and it has many other possible uses. In their pamphlet they note that Dr. R Becker discovered that silver ions not only healed wounds quicker, it also caused bone, muscle, and nerve tissues regenerate!! I’d read of Dr Becker when he was using acupuncture and electric therapies in wound care so I have an idea of his work.

Thought I’d pass that along here.

Ciao

IC UPDATE, no good news here

As though having IC is not bad enough now I’ve read that taking some medications long term is being reported as causing an increase in mental clouding….sometimes called dementia.

I’ve taken elavil for about 30 years and I feel sluggish all the time and concerned about my mind.! I’ll start tapering it down while I start something recommended called PEAORA POLY 500 dietary supplement. (sold on the IC website.) This has been used in Europe for years for pain management. I’ve started with one tablet daily to start and will taper back on the Elavil, which is kind of scary, but I’m hopeful.

I’ve added this information from the IC optimist website.

For interstitial cystitis and overactive bladder patients struggling with intense urinary frequency and urgency, physicians often prescribe anticholinergic medications such as Amitryptiline (Elavil), imipramine (Tofranil) or Nortryptiline (Pamelor), Oxybutynin (Ditropan, Oytrol) or Tolteradine (Detrol). Unfortunately, their use has now been linked to cognitive decline and dementia in some patients who use it daily for long periods of time.

New research from the United Kingdom studied the medical records of 58,769 people with dementia and 225,574 without dementia, all 55 years or older. They found that long-term, daily use (3 years or longer) of certain anticholinergic medications were associated with a 50% higher risk of dementia, including: bladder medications for overactive bladder, antidepressants, antipsychotic, anti-Parkinson’s and epilepsy drugs. The study found no significant risks for two other types of medications also used by IC patients (anthistamines and skeletal muscle relaxants)  although the number of patients using them were small. The authors strongly suggested that anticholinergic drugs should be prescribed with caution in middle-aged and older people.

We asked Dr. Robert Evans for his thoughts on this issue. “We have always known that elderly patients can develop mental status changes, confusion and even dementia if exposed to anticholinergics which is why so many of us prefer to use Mirabegron for pts with overactive bladder” he said. “I rarely use anticholinergics in patients with IC as I do not think they help decrease frequency.  The reason is that IC patients void frequently because of pain not because of overactivity. These meds will not decrease voiding frequency since they do not help with pain.  I especially want to avoid them on patients who are on other drugs with anticholinergic activity such as antihistamines, tricyclics or gabapentin.” 

Thankfully self-help strategies can also help! Many IC patients have learned that their frequency and urgency is often triggered by certain foods and beverages.  If you are struggling with symptoms and still drinking coffees, sodas, green teas, black teas, there is hope. You could feel much better in a relatively quick period of time by modifying your diet and eliminating these risk foods. It’s certainly worth trying, right?

Spring/Summer 2019 IC Optimist Magazine

You can find a more extensive discussion of this topic in the Spring/Summer 2019 IC Optimist, the ICN Member magazine. Learn more here! 

References:

  1. Coupland C, et al. Anticholinergic Drug Exposure and the Risk of Dementia. JAMA Intern Med. Published online June 24, 2019. Accessed June 30, 2019 – https://jamanetwork.com/journals/jamai nternalmedicine/fullarticle/2736353

This new study is going to challenge the already challenging treatment of IC, now we can’t take the medications that allowed us to improve our quality of life with IC.

50% is a impressive number!

September is Interstitial cystitis awareness month

A word to encourage those suffering with IC that it can get better over time and may not always get worse.

I’ve had IC since about 1990 , I don’t expect to be cured of it. I want to manage it and not let it manage me.

I was lucky to be a nurse with access to the medical library and realized early what my diagnosis was, when I told a MD friend I thought I had IC he said “no you don’t want that.” He was right, I didn’t want that, but here we are years later and I still have IC. Many suffer for years before they get a diagnosis.

Initially it was pretty awful if you are reading this you know what I mean. So I won’t get into the many ways we suffer with this bladderbitch.
I have found that stress reduction and medication has made a difference in my symptoms, I can eat what I could not and even drink coffee if I am cautious . I know that if I wake up in the morning in pain, which happens less and less, I need to be careful and avoid my triggers. I drink ensure every morning instead of having coffee.

I’ve seen several urologist over these years, some good and one really terrible, who thought I was drug seeking and told me there is no such thing as bladder spasms and I didn’t have IC.

I never went back to see her.

The next urologist I saw insisted I had to have a cysto but agreed I couldn’t have it done in the office because the last one I’d had the MD punctured my bladder and it was horrible. So in the OR he found I had profound damage and ulcers in my bladder, he was convinced I had severe IC and gave me what I needed for pain started me on what for me is the miracle drug elavil (amitriptyline) 10 mg at bedtime, I currently take 100 mg and even more if in a flare, but it works for me and I don’t expect I’ll ever stop needing it, I’ve tried to decrease the dose when feeling good but always need to go back to 100 mg. So yes, I’m much better than I’ve ever been and I remain cautiously optimistic and hope that reading this might give hope to someone just starting on this rocky road that it can get better.

Elavil is an old drug, super cheap and has of course some side effects that include weight gain, dry mouth, & constipation and for some an increased heart rate all easily managed if you hang in there. If your uro hasn’t suggested this medication for you, you should ask about it. Cheap, effective is an antidepressant and helps with nerve pain and sleep. I think this outweighs the tolerable side effects.

I have a urine cytology test yearly because chronic inflammation anywhere can cause a change in cells (and no matter what you are told, it can initiate cancer growth). I have inflammatory cells in my urine even though I feel better, it’s still a damaged bladder.

Not everyone can take the steps I’ve taken to manage life, nor would they want to, I wonder if I’ve made the right choices. Then I remember last year I still lost several days in pain every month and since I’ve moved I’ve only had a few hours in pain and haven’t needed pain medications more than 4 or 5 times for comfort. It can be lonely but now I have Charley to take care of and that helps us both. This works for me right now.

I really hope that some one reads this message with hope and if I can help anyone understand interstitial cystitis you will only have to ask.

We need a cure.

The scourge of restless legs/WED

I know that my sisters will agree with me that there is nothing we know of that beats the distress of having your legs convulse when you are resting or trying to sleep. There’s an anxiety you feel when it starts and you hope it will be distracted by moving about, which you must do as there is no way you can stand or sit still. This affects your quality of life. Imagine sitting in a movie and you shift yourself about trying to not disturb when finally you give up and leave your seat missing the movie yourself and who ever you are with. Or you are on a rode trip and you haven’t taken your meds, medication that supposedly helps but in the long run may only make it worse. I write this while swinging my right leg in the air and trying to balance my computer on my stomach cuz I want to write this now. Usually when I get it I feel it in just one leg (at at time)We take a medication to prevent this daily, some times it doesn’t work and we are left moving and shaking our legs, we know when either of us have it by the way we move our legs back and forth and shaking and we say ‘did you take your pill? Sometimes we have and still get the shakes and wiggles. You can imagine how it is for me with such limited space to move around in at least my sister has a house to roam

It’s a crawl-ly feeling in you get in your legs, a restless sensation that doesn’t allow you to ignore .Opiates help but who wants to take that step, while being an appropriate drug even if you agreed who would prescribe it in this ‘war on drugs’. If I feel desperate I’ll use my IC pain med for it but what if I need it for IC, which is worse pain of IC or RLS? Why do I have to chose between and what if I run out and can’t get a refill? Pain management has gone through many changes of late now of which are good for those needing pain management.

www.rls.orgRestless legs syndrome (RLS), also called Willis-Ekbom Disease, causes unpleasant or uncomfortable sensations in the legs and an irresistible urge to move them. Symptoms commonly occur in the late afternoon or evening hours, and are often most severe at night when a person is resting, such as sitting or lying in bed.

It could be worse right?