[Jesse88]

Hi everybody,

After nearly three months the Imuran appears to have kicked in and I've been trying to wean off the MTX injections and just go with the Imuran. I don't think it's going to work. After dropping to .4 ml. last week I'm having some pain problems again. I injected .2 today, hoping against hope that that Imuran will start working more and I'll be OK, but I'm afraid I'm going to have to make some decisions with regard to my medication. Of course I'll talk to my RD at the next appointment, but since I may have to rethink my current regimine, I wanted to ask what meds you're all on that have been effective for you. I know we all react differently, but I want to know all the options and how well others have done on certain drugs. I may end up with having to take both Imuran and MTX, which I was hoping to avoid, but before I give in to that I want to hear of your experiences with your medications. Thanks guys!

 

[mooks]

hey Jesse, this is a good question to ask and id be very interested in the other answers too! Sorry to hear you are having problems coming off methotrexate...why are you changing?
I would say plaquenil worked for me in the beginning when my lupus was very mild, but now i just take it for the sake of it i think!!
Prednisolone works wonders on all the symptoms i get but of course none of us can take high doses of that forever!
Methotrexate made me feel the best i have in ages for a good 6 months, but the side effects for the two days after i took it were ridiculous and my wcc got pretty low so i always got loads of infections.
Now ive come off mtx and my lupus is reaallllyy bad! and im on Arava(Leflunomide)and its not working. have been on it for 6 weeks now and have no noticed it at all. Wonder if it works for anyone else? I dont like it!!!!

hope lots more people reply! xxxxxxx

 

[Katharine]

Hi Jesse (and Mooks)

I think this is a really difficult question to answer, not really sure it can be answered...

The thing is that the disease itself is extremely varied (as are the people who get it). What works for one person may not work for another. For example some people are intolerant to some meds or they may find the side effects too strong. They may have a parallel medical condition which prevents them from taking something someone else would.

Unfortunately it is often a case of trial and error to a great extent and that takes time and a good relationship with your doctor.

It is important to remember that, for the majority of people, there are far more options than we could ever imagine.

On the whole, people who have more active/severe disease tend to be on a combination of meds. Plaquenil is often the base of that combination and even if it seems (Mooks) that its effect is insufficient at times, its efficiency is sadly often only really noticed if someone comes off it for whatever reason and suddenly discovers that, yes, it was doing a lot of good.

Sorry that my answer is an answer that doesn't actually answer anything!

Katharine

 

[Jesse88]

Thanks, Katherine, I understand what you're saying. This is kind of a research thing for me, learning about what else is out there. There are so many meds available but I'm not sure which are used for lupus. I also asked this question on the Sjogren's forum and was amazed to learn that most of them are on much milder meds than me. So I guess it's the lupus that's causing the need for these big gun meds.

Mooks you sound like you're in the same boat as me. I agree with Kath about the Plaquenil. I didn't think it was doing much either until I tried to cut the dosage in half and ooh boy, I found out how much it really was helping. Having said that, I do think there is a certain wisdom to re-thinking our meds from time to time to find out if we still need as much as we're taking. My sister recently cut back on her meds after 9 years and has found that she can do very well on much less.

I want to stop the MTX because it's giving me major problems with my skin. The acne I can deal with (grudgingly) but I also get constant cold sores and that is just not acceptable. I'm so afraid of passing it on to my husband, grandchildren or anyone who might happen to touch my face and then maybe also get the virus. I can keep them somewhat under control by taking acyclovir 2x daily, but I don't want to do that the rest of my life. Also, the .8 of MTX that made me feel the best is too high to stay on, according to my RD. So, I continue to tweak and hope the Imuran will get stronger, but not so strong that I'll have the same problems as with the MTX.

 

[Katharine]

There was a similar post to this recently, you might find it interesting

http://www.thelupussite.com/forum/showthread.php?t=69867&highlight=medications

Katharine

 

[Jesse88]

Excellent! Thanks Katherine. That's exactly what I was hoping to learn. I'm amazed at the amount of pain medication lupies need to take. Also, the lupies truly are on more potent meds than the Sjogren's people. I'm always wondering how to know when it's time to take more pain meds or if it's time to up the lupus meds. Pain meds don't stop progression/damage, but I feel they're less toxic than the lupus meds. So what is the true risk vs. benefit in the end? Up the toxic lupus meds in the hope of slowing the progression/damage, or just worry about pain relief?

I'm just thinking out loud here. I don't expect anyone to have all the answers for me on this. But I always welcome your comments.

 

[Katharine]

I think that the answer Jesse is a combination. Pain can lead to inflammation, inflammation can worsen the disease and its symptoms. So yes, pain management is important but so is modifying the disease through drugs like plaquenil, imuran, cellcept, MTX...

For me it isn't a choice of one or the other. Nearly all meds have side effects and they don't necessarily have to be prescription meds to have the worst ones. Plaquenil, for example, has far fewer side effects than many OTC meds and things like apsirin and paracetamol can do great harm to our stomachs when they are taken regularly without medical supervision.

Basically, it really is a question of finding that balance with the doc. The lists of meds can be quite frightening when we look at them but it is generally agreed that it is better to have a combination of meds (which allows lower doses of each) than having to take too much of certain meds.

Since that list was written, I have two more meds in my list. I'm always wary of adding things but they have helped me enormously.

You also need to remember that some meds will act directly on the disease, some will help with pain, some with other trouble/symptoms linked to the disease.

Katharine

 

[Lily]

Hi Jesse,

I agree that a reasonable expectation is fair control of the disease with DMARDS and Immunosuppressants and pain and other meds as necessary to get us by and enable us to have a quality of life. In each individual that will vary. It takes time to find that magic combo though and it's not always static. At times needs will vary - adding/taking away and monitoring for side effects constantly of additional meds (esp pain meds) is necessary.

love
Lily

 

[Jesse88]

OK, this is good information. It sounds like I shouldn't expect full control of pain with the DMARDs, therefore I don't have to take as much of them and can supplement them with pain medication. Right now I'm having quite a bit of pain because of the low dose of MTX I took today and I'm tempted to take some more, but I took naproxen instead and now I'm about to get a heating pad. I'm going to try this approach until I talk to the RD next month and discuss the correct ratio of DMARDs and pain medication.

Thanks to everyone for helping me to sort this out in my mind.

 

[Maia]

One slight clarification here...

pain=inflammation. Or more accurately, inflammation causes the pain we feel whether or not it shows up in bloodtests (not the other way around where pain leads to inflammation). This is what my rheumatologist told me... hence why it is most important to have the DMARD medication(s), which will hopefully suppress disease activity which will suppress the inflammation and ultimately help with the pain.

But it is also important to have pain medication for a variety of reasons. NSAID's can also help to reduce inflammation, lessen pain, improve our ability to sleep due to less pain, etc. Other pain meds can also help reduce the pain, which can help the sleep cycle; and good quality sleep can also help reduce pain.

 

[Katharine]

Thank you Maia Very true that pain, inflammation bit was kind of the wrong way round! Must be careful to screw my brain on in the future :lol:

Katharine

 

[Jesse88]

Thanks Maia, your post coincides with what my RD also believes. When I asked him once if I could just "tough it out" without the MTX until the Imuran kicked in he said no because more damage would result during that painful period. Which still leaves me (and everyone else I guess) with the decision of how high we want to go with the DMARDs before saying that's enough and time to supplement with pain pills for the left-over pain. I guess this is something the RD will have to answer for me.

 

[cath]

Hi Jesse,

I'm not sure how helpful this will be for you, but in terms of pain control a guideline is to do a pain score of 0 to 10 (0 being no pain and 10 being unbrarable pain, eg such a with childbirth or passing kidney stones).

A pain score of more that 4 needs/is worthy of action.

I found this helpful because whilst I still have pain in my joints, it is now pretty much always under 4. My other symptoms are also about 90% better, so all in all I consider this good disease control. When it gets worse, I see my rheumy and have a short course of pred.

This may also be a useful guide for you as to how well your disease is controlled. You'll need to know your recent blood test results...

http://www.medalreg.com/irh/medal/ch22/ch22.07/ch22.07.02.php#result

All the best,

X C X

 

[Clare.T]

The second article might be interesting especially the parts about the physiological effects of pain since that seems to be a major part of the question. Of course the psychologial effects matter too and have a knock on effect on the physiological of their own, a sort of vicious circle. The first article is of interest too. It seems to me that each aspect of the disease including pain is dealt with and treated as needed at any given time.

You can't know how much pain will be relieved by the disease modifying medicines. If you wait until a medicine has achieved its maximum effect at the maximum recommended dose there could be a year even years of untreated pain. Of course the cause of the pain has to be identified too. This can take time to determine. Then too it can take time to find what relives the pains best.
Good doctors understand the great importance of pain relief these days and it is an essential part of treatment. A good doctor will acknowledge you pain
Putting on a brave face serves no purpose. Unfortunately we are conditioned not to complain and appear 'wimpy' and in fact often have to deny suffering to get through everyday life. It is hard to let go and face the facts for the doctor's appointment.

Cath thanks for that very useful site. I have often read of the SLEDAI.

www.capc.org/support-from-capc/audio-conf/past-audio-conf/4-11-06-audio/coyne-pain-management.ppt

http://www.nursingtimes.net/ntclini...physiological_effects_of_unrelieved_pain.html

All the best
Clare

 

[Jesse88]

Cath and Claire, thank you for your posts. I'll put the attached links in Favorites for easy access.

I really do think I have a better understanding now of what is acceptable pain-wise. Having a number to refer to (under 4) gives me something concrete to use as a guide. That, and doing my own evaluation (once I get all my blood work together) will be helpful in knowing what I can ignore and what needs attention and that's what I've been struggling with for so long. Also, the psycological aspects of chronic pain was something I never even considered, but is really an important part of the whole picture. I can't call the RD in between appointments every time I wonder if the pain I'm feeling is "damage pain" and now I feel better equipped to handle much of it on my own.

Great information. Thanks again.

 

[Bullwinkle]

Nothings working well for me today ... but thanks for asking. However it doesn't stop me from taking all the meds as directed ( Pred. MTX, Plaq. etc.)
in hopes that maybe later in the day I will feel better , or at least tomorrow.

You've gotten some great responses to this thread, and I thank everyone for their input. It does help us all.
Thanks gang.