"I Had a Nightmare Dream"

Here's a conversation about pain between two good friends who gave me permission to use their words, and whose names are changed.

"I had a nightmare type dream where I was in a car with others and I lost control on a curve.  I regained control quite quickly and no one was hurt.  Now that's quite a telling dream, huh?"

That's what one of my support group friends reported when she woke up in the morning with her feet and lower legs hurting like the dickens - she said they were "on fire". So she took her pain med and looked forward to feeling better because she had a busy day planned...

With a forecast for strong thunderstorms, a high of 90 and very high humidity she blamed some of it on the weather. She said "I wish my doc would let me take more medication on the bad days but he is worried about the changes in the brain that opioids make."

"Oh well...when I hurt enough I guess I will complain louder."

Gail replied "I do wish the doctor would listen to what you’re saying about the pain Robin. I’d say, what about what the constant pain does to the brain and how you feel in yourself?

Gail went on to comment that she had one of those days yesterday where the pain meds just didn’t cut it; by the afternoon she felt awful, stiff and painful and the fatigue hit super hard. I held off but relented with extra pain meds by 6pm and my evening was much better. Does anyone else have days like that where you’re literally counting the minutes to the next pain med dose?" 

Robin told us "Out of the 24 hours I get relief for approximately 8 if you consider how long it takes for the med to reach all the brain sensors for pain and then the time it begins to start back to "normal".  I was counting the hours yesterday to when I could take the second. 

Exactly Robin, replied Gail. Which pain med are you on? I’m on Di-hydrocodeine and that takes 50-60 minutes to metabolize in the liver. I then get between 4-6 hours before they wear off. I do know what you mean too about how fascinating it is, the way one day your elbow for example can be in absolute agony and then next day, nothing! Sometimes hour to hour is like that, it’s a crazy disease for sure

I am on hydromorphone 2mgs.  I feel better today. So I was able to sleep from 7-9 but it wasn't refreshing sleep.  I'm not sure I will ever have that again. 

I know my friends use a variety of methods to stay mobile, to distract themselves from the pain socializing and doing creative activities and yet this is not always enough. 

Another member of our group takes a very low dose pill usually only once a day, and yet despite the fact that she is stable and also almost 80 she is forced to make an extra visit to the doctor every month to get a new prescription. he feels he is doing her a favour because she is his only patient on any opiod at all and if he did not do this she would be forced to go to a pain clinic.

Things are getting very difficult for patients with chronic pain who just want to be able to function for at least part of the day. Every drug we take has an inherent risk of course. If I could not take Nsaids I don't know what I would use as an alternative, and yet Nsaids commonly cause cardiovascular and stomach problems, especially as you age. The alternative medications for pain are all risky and we are being warned about almost every painkiller.

It seems that patients are more and more expected to find their own remedies and many of us are very skilled in using every strategy we find already. Where do we go from here?

I actually saw an article where orthopedic surgeons were discussing cutting back on strong painkillers. I will admit I could do with less than a week's worth usually, but don't even try t talk to me about mindfullness two days after one of my joints has been fused or reconstructed.

This post is part of RA Blog Week. More blogs on this topic can be found here.

Seems Like An Old Story Now

By now I have had arthritis for more than half of my life, so it's hard to even remember feeling normal and healthy.

I have rheumatoid arthritis (RA). It’s an autoimmune disease that does not affect any of my relatives, including my 50 first cousins.

50

When my kids were pre-teens I started to have pain and swelling in my wrists, fingers and feet. I was suddenly so tired after work that I would just lie down and feel unable to get up again, even for dinner. 

I was losing weight too but I thought that was because I switched from Pepsi to Diet Coke. 

My GP doctor seemed to think the symptoms were all in my head. When I said I was extremely tired he said "You're a busy active Mom."  When I told him about my foot pain he said it was because I was on my feet a lot. And when I had an oval cyst on the back of my hand he said they used to call them Bible Thumpers, because if you whacked them with the Family Bible they would go away.

My doctor made me feel that I was exaggerating and incompetent and I felt powerless to change the situation. When I left his office I would feel I should try harder but that brief dismissal did not help me at all. I knew there was a problem - sometimes I actually could not stand up first thing in the morning and had to crawl into the bathroom. 

The last time I saw him he told me to take 12 aspirin a day and come back in 3 months. That did not work at all and I still have ringing in my ears caused by all those aspirin.

Walking Gallery Jacket by Regina Holliday reflects this era

The only way I could think of to deal with the problem was to change doctors. Sadly the 2nd Dr. was no help either. The 3^rd was actually a foot surgeon who got the right answer less than 5 minutes after I saw him in his clinic.

During that 2 years it took to be diagnosed I developed permanent joint damage in my hands and feet (also jaw and neck as I found out many years later). One seemingly trivial result was that to this day I wear ugly shoes because it’s better than limping. I have had 10 surgeries to maintain my functional abilities but have a weak grip, can’t garden or vacuum and hate to stand a lot even at parties.

I have taken immune suppressant drugs and NSAIDS for the past 30 years and managed to work up until I retired, though I did need to change my job for one that had less physical stress.

That happened in the 80’s so even when I had a name for my health problem all I knew was what I learned from my doctor. This was before home computers were common and with a job and 2 kids I did not have the time or energy to do all I needed to do, let alone go to the library to learn more.

Things are different now. Last week googled my original symptoms “pain in hands and feet, fatigue, swollen joints" and found a million results in total with 7 out of the top 10 links mentioning RA.

Imagine if I had access to that in the 1980s – I might have known very quickly what was wrong and insisted on seeing a specialist. With knowledge we have power, and it is great to see more and more patients becoming very knowledgeable about their own health.

... to be continued in the next post... Active vs Reactive Patients

This post is part of RA Blog Week at the end of Arthritis Awareness Month. To see more blogs on this topic click here

Patient Stories About Generic Drugs

Like almost everyone else who uses medicines to improve or maintain their health, I take a large percentage of  generic drugs. Up until the last few weeks I have not noticed any difference in the effects of brand name vs generics.

                                           Generic drugs 

Unfortunately that is not the same for everyone, and now I am joining their ranks. One of the drugs I take recently just became a generic and I noticed a real difference quite quickly.

With most medication you judge the efficacy by a gradual change in the way you feel or by lab tests that indicate how well they are working in your body.  So many drugs that we take are preventive or work slowly on changing your system. With those you are unlikely to notice a difference. This new generic (Pilocarpine, brand name Salagen) is the only one I take that takes effect quickly and has a noticeable physical effect.

                                   Non-generic - see markings
My doctor wrote me a note and a new prescription that says "no substitutions". The insurance company says fine, if the doctor says I need the brand name they'll pay (and so will I of course) so that is lucky for me.

Neither the doctor nor the pharmacy mentioned reporting an adverse effect for this new generic. I was able to access the 32 page monograph that the new manufacturer supplied to Health Canada. They listed every paper about the drug from the past and talked about how the drug worked in trials compared to the brand name drug. They only tested the effects on 5 women. I guess I'm not like them.

Patty's Story:

"I am taking the generic Prevacid and I don't like the effects.  It upsets my stomach.  I stopped taking it.  I don't know which one would be easier on my digestion.  I don't think I ever got the brand name Prevacid though I do hear the acid reducers are hard of the gastro tract. 

I haven't been able to get Prevacid..still jumping thru hoops for that.  I'm not taking anything....just sort of po'd.  And not doing a thing about it.  I'm trying out the 2nd manufacturer but really not.   The pharmacist says if the Dr pre authorizes it, I can get it but he already did pre authorize it and I still was denied.  I am still waiting for approval on the Reclast....  I think they hope I break my hip or leg first. Then they'll approve it. 

                                                 Patty is angry in a non-threatening way

I'm just so mad....I don't know when the patient had to be their own doctor, secretary and insurance company to make sure you get the things you need."    

Julie's Story

"I am going to add my experience with the generic of Prevacid to Patty's reply.

I have Barrett's esophagus - thanks to use of NSAID's.  This is a pre-cancerous condition.  The doctor put me on Prevacid and it really helped.  At a follow-up endoscopy, he could barely see anything in my esophagus.

Well, my insurance company switched me to the generic of Prevacid - Lansoprazole.  I tried that for about a month and started having GERD symptoms.  After much confusion and doctor's visits, my insurance company agreed to pay for the Prevacid.  I started back on the Prevacid and things returned back to normal.  So no one can tell me that the generic works like the Brand name drug.  I had to get special permission from the Insurance Company to get them to pay for the Prevacid.  I told them that if they would rather pay for treatments for esophageal cancer instead of the correct medication, then that was their choice.  I have to get approved every year.

                                   Please approve my brand name drug

The Prevacid is EXPENSIVE!.  I don't quite understand why.  Another thing is that Prevacid is sold OTC - but the strength is 1/2 of that of the prescription medication.  I take 30 mg and the OTC is 15 mg.

Insurance companies are really getting screwy with what they will allow their patients to have."

Julie

Patty continued...
My Caresource insurance lady was telling me about Exact Care where you get your meds in an easy tear off pouch all tightly wrapped and inside a little cardboard box.  All your meds for the month are there...just tear them off as the day goes along...am pills, lunchtime,  afternoon, PM and evening, bedtime.  She asked would you be interested in that? Its so convenient.  I said no way....they're already substituting my meds when I pick them up at the pharmacy. Or switching manufacturers on me.  I want to see what I'm getting and I don't want a month of a med or two that they've subbed that may make me sick or is totally different than what I am used to.   

Ronny's Story:

"I guess you are proving my point.  The move is towards saving money first and finding healthy resolutions second. 

Many years ago it was predicted that this time would come.  Health would be the big commodity and everyone began positioning themselves to make out like bandits.  The health center I worked for had big meetings to discuss how they could position themselves to take advantage of the health boom and also baby boomer aging.  They got in early.

Now we have to fight to keep what little Social Security we have.  I was hoping I could afford more fruits and vegetables.  Guess that's not happening!"

                       AmusingPlanet.com Harrowgate Flower Show. Fruit&veg for Ronny

Here's another story about generics from CNNMoney - Are Generic Drugs Really The Same as Branded Drugs? . This story points out that although generics compared to the brand name they are not compared to one another so the relative usefulness is unknown.

This is the link to the original post called Generics: Not Just an Image Problem

Patient View of Humira

When I first developed RA the treatment plan given by my Family Doctor was to take a maximum dose of aspirin (12  pills a day) for a three months to see if that would have a beneficial effect. Over those months damage continued to occur. Since this treatment did not seem to make a difference I found another doctor. His treatment was NSAIDs, specifically Indomethacin: That resulted in gastro problems added to the pain, swollen joints, weight loss and fatigue.                     

                                   

When I finally saw a specialist over a year later he outlined the possibilities  The most aggressive treatment was in his Pyramid of Possibilities was immune suppressant drugs.  I was prescribed gold injections and then transitioned to methotrexate.  Over the years the methotrexate was combined with almost every other DMARD (disease modifying anti rheumatic drug) possible.  I kept trying all the combinations hopefully over the years until I became more involved and informed about treatments and possible choices. 

Once I was aware that methotrexate does not actually stop damage to the joints and found out there were other choices that did stop joint damage I campaigned for treatment with a biologic drug. In my reading I had learned that biologics produced a greater sense of well-being and a better quality of life at the same time as they stopped progression of damage. 

I saw the info above in online CME (Continuing Medical Education) courses during the time that pharmaceutical companies were the major sponsors of many of them. Reports of drug trials like the PREMIER Study and ARMADA were a further influence on my desire for biologics.

I combined this knowledge with the facts of my life.  I was working full time but all other areas of my life were neglected because of  pain and fatigue.  Most of the time I was not at work was spent resting up to be able to continue to work. My exercise tolerance was very poor. It used to take me two days to recover from any efforts beyond isometrics. Now with Humira my recovery time from exercise seems normal and I am able to do more in a day than just work.

There has been great progress in the treatment of RA over the past years. Prior to 15 years ago there were only 7 new treatments found in 70 years. Now it is hard to keep track of all the new alternatives. The improvement in treatment is noticeable even by the look of the people waiting at the rheumatology clinic. No wheelchairs and very little visible damage can be seen now.

Some of my friends in online groups have had moderate or serious adverse effects that have led them to discontinue biologic drugs. However at least as many have said that a biologic has given them their lives back. That is important!  Even if my improvement on a biologic is not remission and amounts to me feeling 20% better it’s a welcome change.  

Progression is the major factor in my choice. I can’t afford to have any new joint damage. While only one active joint may sound like good control to many, when that one joint fuses it’s useless for good and the disease moves on to another one. There are no miracles in RA that unwind joint damage.

Over the past 7 years that I have been taking Humira I have been sick 4 to 5 times with colds and flu and the severity has seemed worse but not the frequency. 

I did express concern about the price before I started to use adalimumab. The “payment specialist” with the organization that Abbott uses to distribute the drug looked into methods of payment to lessen the financial impact. That organization paid my deductible for the first year to make the  transition easier.  It was a good investment for them seeing that I am still taking it after seven years.

I have been influenced by this great talk by Dr Edward Keystone called The Most Exciting Time Ever In The History of Arthritis and by Dr Shashank Akerkar's blog post called Time, tide and inflammation waits for nobody.

The choice of Humira as my biologic was mine. The Dr. I was seeing gave me a choice of the 3 major anti-TNFs. I had concerns about one and chose Humira based on the ease of use and my schedule.

Despite my enthusiasm for effective treatment I am anxious to see full disclosure of significant risks through the release of data from clinical trials. The legal action blocking disclosure of trial data by pharma companies Abbvie and InterMune is a step backwards for patient safety. There is a petition here against the lawsuit.

Their lawsuit has shut down the whole public access program of the European Medicines Agency.  Patient safety is not a trade secret! To paraphrase @ePatientDave "Give us our damn data."

If we are choosing to take these budget busting drugs we should have access to data about them.