Leanne's Remicade Diary

April 2002 - October 2002
While I had been noticing an increase in my symptoms for about 12 months, my latest flare started in earnest around the first week of April, 2002. This flare is affecting all of my joints and the pain was no longer bareable. At the start of the flare, I was on 20mg Arava and 1000mg of Naprosyn per day as well as the 25 mg of Methotrexate per week. I had been on the Naprosyn and Methotrexate since 1993 and the Arava for 12 months. I added panadol as soon as the flare started but this didn't make any difference. My next rheumatologist appointment was not until June but I knew he would tell me to take 15mg of prednisone for 3 days and then try reducing it (as this is what I had always done in the past to control flares). I hate the side-effects of prednisone so I held of until the end of April.

After a week of 15mg per day of prednisone, I still had no releif so I rang my rheumatologist. I couldn't get an earlier appointment as he had just got back from overseas but I did speak to him. He advised me to take 50mg of prednisone for 2 days with a 5 mg reduction every 2 - 3 days with the aim of me being back down to 10mg by the time I saw him in June. After the 2 days on 50mg, I began to feel relief but this was short lived as each reduction in dose was accompanied by an increase in pain. By June, I was still only down to 20mg and struggling to get through the day.

At my appointment in June, my rheumatologist gave me 2 options. The first was to try methotrexate injections (which I was reluctant to try as the methotrexate hadn't really been helping for over a year) and the second was Cyclosporin. Because Cyclosporin can cause high blood pressure, he advised me to try the methotrexate injections for 2 months while we established my baseline blood pressure. This was a good decision in hindsight because we soon discovered that my BP was actually quite high. In fact, it was so high that I had to start taking anti-hypertensive medication (just what I needed - another daily tablet to take). This meant that Cyclosporin was no longer an option.

After 8 weeks, I went back to my rheumatologist with the bad news that the methotrexate injections hadn't made any difference. His next suggestion was Remicade (on of the new biologics). Unfortunately, neither Remicade nor Enbrel (the other biologic approved for use in Australia) were listed on the PBS and both cost upwards of $15000 per year. There is no way we could afford this so my rheumatologist said he would see if we could get me accepted by one of the hospitals as a public patient which would mean that the hospital covered the cost (Remicade is given as an infusion over 2 hours and is administered in outpatient clinics at the hospitals). I was finally accepted as a public patient at Gosford Hospital and my first Infusion was to be on the 15th October.

October 2002
I arrived at the Ambulatory Care ward at 9:15am. My arms were inspected and it was decided that inserting the canula would not be easy (yet another side-effect of prednisone). The IV Therapy nurse was on the ward to insert another canula so she did mine as well. She was certainly good at her job cause it went in first go. Unfortunately, pharmacy was still mixing the Remicade into an IV Solution so we were in for a bit of a wait (this turned out to be a 2 hour wait). During this time, I moved my arm slightly and felt a sharp pain above the site of the canula. It stopped after 10 minutes and there was no bruising or swelling so we didn't think much more of it.

Finally the Remicade arrived and the IV was started at midday but almost immediately, I felt a burning pain just above the canula (about where I had earlier had pain). It turns out that the needle had slipped through the vein (probably due to a thining of the vein wall due to the prednisone). IV Therapy weren't available to reinsert it so the doctor decided to have a go. 4 attempts, 3 bruises and a lot of tears later, he finally got one to stay in the vein and the infusion was restarted. I was so worried about the needle moving that I held my arm perfectly still for the next 3 hours (the infusion takes 2 hours and then the canula has to stay in for another hour in case I had a reaction that required treatment through an IV). After all this, the infusion was incident free. I did start feeling really tired about an hour into it and by the end I had a severe headache.

For a week after the infusion, I felt really tired and lethargic. I had trouble concentration for any length of time and was totally exhausted by the end of the day. The severe headache also lasted for 4 days and nothing I took for it helped. All in all, I was a pretty miserable person for a week. After that, my energy began to return and I noticed a definite improvement. The morning stiffness had significantly decreased and I had a lot more movement in my knees and shoulders. In fact, I could raise my arm above my head - something I hadn't been able to do for over 6 months.

The second infusion took place 2 weeks later (on the 28th October). Again, I had a 2 hour wait for the Remicade to be prepared but this time, the canula was not inserted until the Remicade had arrived. This went smoothly but the infusion was not as smooth. The nurse who was monitoring me obviously misunderstood the instructions and set the flow rate too high. After 45 minutes, I noticed that the bag was almost empty and I questioned her about it. She assured me everything was set correctly but the infusion was completed in an hour instead of the 2 hours it is supposed to take. Thankfully, this did not cause any reactions. I still felt tired afterwards and, even though I had taken panadene before the infusion started, I also developed the headache again.

The first week after the infusion was a carbon copy of 2 weeks ago with the tiredness and headache. The lack of energy and feeling tired was so bad that I had to take the day following the infusion off work and I slept the whole day. I am also moving my future infusions to Friday so I have the weekend to recover. I did notice further improvement after this infusion but I did get an increase in pain and swelling after 3 weeks (the 3rd infusion was due 4 weeks after the 2nd one). Even so, my right knee is starting to look like a knee again after being very swollen since the flare started and my blood tests are indicating a reduction in my inflammation levels.

22nd November 2002 - 16th January 2003
I had my third infusion on the 22nd November. As with the previous 2, I had a 2 hour wait for the Remicade. The flow rate was set correctly this time and the infusion went smoothly. Again, the first week after the infusion was characterised by the lack of energy, a severe headache and exhaustion. Unfortunately, while this improved, the arthritis did not. In fact, since a week before the infusion, my pain, stiffness and swelling has been increasing. I am hoping this is due to me reducing the prednisone and perhaps doing more than normal with Christmas and the New Year.

I was able to reduce my prednisone down to 5mg per day just before Christmas but by the 6th January I was starting to have trouble getting through the day again and I increased it 10mg per day. I probably should increase it to at least 15mg per day but my next infusion is on the 17th January and I am really hoping that it will help.

17th January 2003 - February 2003
I wish I had some good news but I don't. My 4th infusion was on the 17th January. They have made changes to the Ambulatory Care Clinic and the NUM has changed. The are also in the process of changing all the procedures. Also, unlike the previous 3 infusions, I only had to wait an hour this time for the Remicade to arrive. The infusion went smoothly (usual tiredness and headache after an hour) and they took a few more observations (BP and temperature) this time.

I was also told that the wait time for the Remicade was less because they had half made up the solution the day before and that this would be the procedure from now on. I didn't think much of it at the time and was glad to be spending less of my day in the hospital. However, I developed hives early Tuesday morning which is indicative of an allergic reaction. This was very uncomfortable for a day or so but was easily treated with extra prednisone and antihistemine.

I saw my rheumatologist on the 7th of Feb and he wants me to continue with the Remicade for at least the next infusion (I have approval for at least 2 more infusions). I am going to take extra prednisone and antihistemine for a day before and a few days after the infusion to hopefully prevent a repeat of the hives. I am also writing to the hospital and requesting that the Remicade only be made up on the day of the infusion (in case the change in preparation method contributed to the hives). If I have another reaction though, the next infusion will be my last.

The hives would have been easier to accept if I had got an improvement in my arthritis after the infusion but sadly this has not occured. The pain continues to get worse and my energy levels are falling. If I don't get any improvement from the next 2 infusions, we will cease this treatment. In the meantime, I just have to adjust my prednisone level as needed to get me through. If I have to stop the Remicade, my rheumatologist has said we will either try Cyclosporin (my blood pressure has improved and I am hoping to stop the medication for it next month) if my blood pressure is good enough or Gold Injections. Either option will be in conjunction with the methotrexate. Our only other possible option is Enbrel if it has been listed on the PBS by then and I qualify for it.

March 2003
It is now the begining of March and my next infusion is in 9 days time. I am still desperately holding out hope that it will help but I have also made the decision that unless I get a dramatic improvement, I will not continue with Remicade beyond this next infusion. My reasoning is that there is an 8 week gap between each infusion and then I would probably have a 2 - 3 week wait after that before I see my rheumatologist (to give the infusion time to work). That means it could be another 3 months from now before we even look at starting a new treatment and I just can't last that long. In the last month, I have had a significant increase in all my symptoms and I am back to the point I was in the middle of last year. I have increased my prednisone to 20mg a day with no improvement and the panadeine I was taking for pain relief no longer helped. I was barely able to function and was unable to sleep because of the pain even though I was constantly exhausted. I have since seen my GP and he advised me to increase the prednisone to 30mg per day (which I have been on now for a week and a half) and he gave me a script for Tramal which is a stronger pain medication but still an analgesic. I am currently taking 50mg of Tramal in the morning and mid afternoon and 100mg of the sustained release form at night. At this dosage, the edge is taken off the pain and I am able to get through the day. I am also able to get some sleep at night which is very welcome. I can take up to twice this amount but find that it makes me drowsy so I have decided to stick with this dosage for now.

Even though each day is becoming more of a struggle, I am still determined not to give up my job and to live my life as normally as possible. I am also forcing myself to do 2 - 3 sessions a week in the pool for 30 minutes each time. The pool I use is indoor and somewhat heated. It has also been designed for rehabilitation work so it is only 25m long and a constant 1.2m deep. It also has a ramp to make access easier. My pool sessions comprise me walking up and down the lane for the 30 minutes and, depending on how I am feeling, I will vary the speed from a slow walk to a slow jog. I have also invested in water weights which are like dumbells for use in the pool. These help me to maintain a better rhythm, give some extra resistance and help to work my arms. While I would love to be able to work out at a greater intencity to improve my fitness and loose some of the prednisone weight, my main aim with these sessions is to keep my joints mobile.

It is now 5 days since my last Remicade infusion. After a few hassles with the hospital, the infusion took place on Thursday, 13th March. I have been taking Telfast since the Tuesday before the infusion (to help prevent hives) and am still on 30mg of prednisone a day. So far I have not developed an alergic reaction so I am thankful for that. I have had my normal headache and exhaustion but these were expected and are tolerable after the first day or so.

Now for the bad news. As with the past 2 infusions, I have received no benefit from this latest infusion. While the high dose prednisone is finally starting to help with the inflammation (it now goes down somewhat overnight), I am still getting significant swelling in my ankles and knees and severe stiffness and pain in most of my joints but especially in my feet, ankles, knees, hips and shoulders. I now use a walking stick more often than not and everything takes me a lot longer to accomplish. I have my next rheumatologist appointment on the 28th March and wil be informing him that I am not continuing with the Remicade. I will add a final update to this diary after that appointment.

29th March 2003
I had my rheumatologist appointment yesterday. As expected, we will not be continuing with Remicade. We again discussed Cyclosporin which is my preference. He took my Blood Pressure (BP) (after manipulating my joints) and it was a bit high. I take my own BP at home and it is sitting around 135/90. I am already under the care of a hypertension specialist and on low doses of a BP med. I promised to take my BP at least once a day and contact my specialist as soon as I saw it increasing. Because the prednisone is raising my BP anyway and I need another medication to start working so I can lower the prednisone dose, my rheumatologist agreed to try Cyclosporin. I will be starting on 200mg per day (100mg morning and night). You can only get the script filled at a hospital pharmacy so I will do this on Monday. I also have to have fortnightly blood tests to monitor kidney function (as well as the normal monthly tests to monitor liver function, ESR and do a full blood count). All my other meds remain the same for now (25mg per week of methotrexate, 1000mg per day of Naprosyn, 30mg per day of prednisone and Tramal as needed for pain).

Cyclosporin takes 2 - 6 weeks to start working so hopefully by Easter I will be feeling a lot better and can start reducing my prednisone dose.

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