when did you start biologics? | Arthritis Information
I'm trying to make a decision about starting a biologic.
Did you start them to get pain relief? Because nothing else was working to get your disease and blood numbers under control? As a preventative?
My doctor has been pushing for this since my onset in November. He says if I use one along with the MTX I am on he believes I will control my disease and thwart deformity. I have read articles that support what he says.
However- I don't want to take any unnecessary toxic drugs. I have cancer in my family history which I hear is a sometimes risk of the biologics. Also I don't feel they have been around long enough to really know potential side effects. Then there are the posts I've read on message boards about people getting MS and the likes from them.
Right now my blood tests show my "arthritis" numbers as being just slightly elevated. I get right out of bed in the morning and get moving. I have discomfort in my wrists, hands, ankles but rarely do I even have to take tylenol.
I would call my RA mild but I asked my doctor and he said no- it is severe. He is basing this on my horrific onset. There was no doubt that my symptoms and blood numbers were severe then. He said what I am not understanding is how unpredictable this disease is. Just because I feel good today doesn't mean I won't feel like death tomorrow. I have had a good 2 months. I'm on 15 mgs MTX per week and I'm down to 9 mgs per day prednisone.
Is the severity of your disease based on onset? Is that a predictor as to what will become? Isn't it possible to just get better? I know there is no cure but....
I definitely started Enbrel for pain relief. I was flaring constantly and I was already on Plaquenil, MTX, and Relafen. I don't think I would have started the Enbrel if the MTX was working for me.
My concern about your post is that your numbers are "slightly elevated" and you also say you still have discomfort in your wrists. This makes me think that your condition might not be under control.
Have you had any xrays, ultrasound, or MRI that shows you have damage?
I only had one xray of my hands as a baseline. No one has suggested anything since.nothing else was working.. I'd been on plaquinel and MTX and was in constant pain, and had erosions in my hands..
we gave the first line meds about 6 months then went to Enbrel. Best decision I ever made.
I was kinda in the same boat as you, My bloods were good and only having minor discomfort in my hands and wrists,feet my Rd increased Mtx, saw no difference, wanted me to go to a biologic.
He suggested Remicade, I questioned this and his reply was that I shouldn't wait for this disease to happen. I decided to give Remicade a try if my insurance would cover,it did and now have had 3 infusions, I beleive my hands are feeling a little better, he did state that it could take up to 6 treatments to feel results. everyone I have talked to getting the treatments really believe that this is a miracle drug. I'm just hoping to stop any more damage and hopefully take away the fatigue.
I know this is a Hard decision to make. I just had my third one a few days ago, and I saw my Rd's partner since mine was on Vacation and I questioned him about being on Remicade because I don't have a lot of swelling and he told me everyone is different, and with me having a high positive RF that you stay ahead of this. he also said Dr's don't put you on these drugs with such potent side effects just to put their kids tru college. I pray that they don't but that has always been in the back of my mind.
janlee
Wow- they went right to Remicade? During my onset when I wasn't responding to any meds my doctor said she didn't think she'd have trouble getting the insurance to OK Remicade because of that reason. She led me to believe they want you to try Enbrel or Humira first. See I'm afraid to inject myself so I though Remicade would be the best biologic for me too.
Hmmm- maybe my doctor sees a high positive RF in my blood work too...
I just don't understand why he thinks it's necessary with "slightly" elevated inflammation markers and with me just having discomfort.
What does your Doc say about your family's history with cancer? I assume you told him about that. That he's still rcommending the biologic makes me think he doesn't see that as a significant risk, or at least that it doesn't out weigh the risk of joint erosion.
If you read posts from many of the people whos RA began before biologics, you'll see a lot of suffering. Many have had to go through multiple corrective surgeries, and extreme pain is a way of life for them. To me that would be very persuasive as far as making a decision for biologics.
Maybe you should get another opinion. I agree that it's a big decision. It's a big drug. If you don't feel very confident in your RD's recommendation then seeking another opinion might help you decide what to do. Keep us posted. :)
My Rd gave me the choice of the 3. he recommened the Remicade, and being a wuss with the needles I choose the infusion, it's not so bad, I get it in the Rd's office they have several rooms with 2 recliners and there's usually someone there to chat with, makes the time past. Rd's are trying to stay ahead of the game is what I'm getting from them. I would definitely aks about the cancer risks with them. maybe age has to do with them oking the remicade for me? since I'm 52 maybe that has something to do with them not making me try other drugs first?( I thought I heard something to that effect, or maybe I'm really suffering with the brain fog!!!!!!!)
I was taking 10 mg MTX raised to 20 in 2 months, with no difference in disease. i was given the choice of the biologics and decided I didn't have the time for infusions and opted for the weekly enbrel.
I have sero-negative RA with good blood work and my RD is aggressive with the disease and after seeing my toes splitting and slight joint changes in hands, he decided to move onto the bios...
I was thrilled after my first injection and had a GREAT two days following. Over doing shut me down for a day or two and then an eye infection due to the plug installed by opthamologist coming loose and irritating and treatment for a possible infection has postponed subsequent shots.. I am anxious to get started again this thursday after antiobiotic therapy is over.
If you aren't comfortable w/ your RD's suggestion, I'd agree with others who said seeka second opinion..
Good luck to you!!
Linncn
Yes I have told my doctor of the family history. Out of my dad's 9 brothers and sisters and he himself, 1 died of brain cancer, 3 died of lung cancer. My brother has some kind of carciroid (sp.?) tumor that is inoperable and metastisized to his liver- he was able to have that removed. Is told this can continue to spread to other places. Mother's side- grandmother died of throat cancer (was 85 and it came on quickly), her sister died of bone cancer. 2 aunts have had colon cancer one aunt's also went to her breast.
To me- that's too much cancer. My doctor says the benefit still outweighs the risk. ?????
Like I said- my levels are only slightly elevated and I only have discomfort.
If I were suffering or my levels were high I probably wouldn't think twice about it.
He is my second doctor. First one wanted me to use biologics too but that was during my onset and I was very severe and not responding to ANY meds.
hi wantobe... i have not had biologics or anti tnf as we say in uk..
i have been put foreward by three rheumatologists.. but the das scoring
is done by a nurse and i scored low on inflamation due to pred.
my esr was 8 and crp 12.. the nurse later revealed she is frightend to put
me on anti tnf due to bad reactions to other dmrds..
when i was offerd the anti tnf i asked myself the same questions as you
i had never questioned any meds before..years ago i would have taken anything to stay
at work.. i would say go by your gut instinct..
Boney
See, I don't know what the stats are. Their is no history of cancer in my family so it wasn't anything I had to consider. Is their a much higher risk of getting cancer from a biologic if their is a history?
I just wanted to add that I can understand why you are having a hard time making this decision. It's one you don't want to have to make even without having the special considerations you have. It must feel to you like it a gamble either way you choose. I hope you can get some peace over this.I started enbrel about 5 months on mtx. Not so much for pain relief as to take care of the inflammation that the mtx just didn't want to touch. I had minimal swelling and pain, got up in the morning fine, etc. but my RD felt strongly that any swelling means damage can be occuring, plus the fatigue just wasn't going away which she felt meant it was still not controlled. Tough decision, but felt it was in my best interest since I was in my first year of RA and it seemed like those first 2 years are most critical in treatment. I don't really like taking both enbrel and mtx and wonder sometimes what the balance is between treating the disease and minimizing any long-term effects. I can understand your reservations - it is tough to move onto the next step. Is it better to have some discomfort to remind yourself to take it easy? Does damage really occur when there is only minimal swelling? Once you start on that path is there going back? Those are all questions I struggle with now and I've already taken the next step. Best of luck in your decision -
[QUOTE=janlee]IBoney makes a good point...if you're on pred, that could be affecting your inflammation numbers.
I started on Enbrel as soon as I received my diagnosis. My rheumy didn't even try mtx until I asked him about it after 6 weeks on Enbrel, because I learned on here that they work better together.
I believe my rheumy starts most of his RA patients on bios because of the results he's seen, but all rheumy's are different.
It may be worth asking your rheumy for a bone scan and new x-rays or MRI's so you can see what's actually going on. I understand that with your family's history this is a really difficult decision, so getting a second opinion sounds like good advice to me.
hi guys hope you dontmind this longish article it is in readable dialect
From time to time, stories appear in the national media linking some types of arthritis drugs with cancer. Expert Deborah Symmons weighs up the evidence and explains these links in more detail.
Professor Deborah Symmons
Most
forms of cancer occur with equal frequency in people who have arthritis
and people who do not. However, there are some forms of cancer which
occur more frequently in people who have autoimmune conditions such as
rheumatoid arthritis, Sjögren's syndrome, systemic lupus erythematosus
and scleroderma. There is also some evidence that certain forms of
treatment may increase the risk of cancer still further – or may, in
some circumstances, reduce it.
Autoimmune diseases occur
as a result of over-activity of the immune system. The immune system
begins to produce antibodies and cells which react against the cells
and tissues of the body. The cells of the immune system in these
diseases are activated and dividing more rapidly than in normal
individuals. This is just the sort of setting in which cancer may
develop - and it is cancers of the immune system which are most
commonly linked with autoimmune diseases. Cancers of the immune system
include certain types of leukaemia, lymphomas and multiple myeloma.
Non-Hodgkin lymphoma (NHL) is the sixth most common cancer in the UK.
Around one in 6,000 people develop NHL in the UK each year. NHL is the
type of cancer most frequently associated with autoimmune diseases.
It
is now known that smoking is a risk factor for developing rheumatoid
arthritis (RA) and so a higher proportion of people with RA are current
or ex-smokers compared with the general population. It is not
surprising therefore that lung cancer occurs more commonly in people
with RA than in the general population. This serves to underline the
fact that RA (and other auto-immune diseases) do not protect people
from developing cancer – and that smoking carries the same serious
consequences in RA patients as in those without RA.
The effect of treatment
People
with rheumatologic autoimmune diseases are often treated with
immunosuppressive drugs such as azathioprine, ciclosporin and
cyclophosphamide. Azathioprine is associated, in particular, with an
increased risk of skin cancers. Any suspicious areas of skin should be
removed and examined under the microscope. Azathioprine also increases
the risk of developing NHL over and above the risk conferred by the
underlying disease. For every 1,000 patients treated with azathioprine
for one year, six additional cases of NHL would occur.
Cyclophosphamide is also associated with an increased risk of bladder
cancer. Some people on methotrexate have developed lymphomas which
went away spontaneously once the methotrexate treatment was stopped –
without any specific treatment for the cancer. Beyond this, there is
probably no increased risk of cancer associated with methotrexate.
Anti-TNF therapy and cancer
Anti-TNF
therapy is directed against a chemical in the body which is involved in
fighting cancers. There has, therefore, been anxiety that suppressing
the activity of this chemical might lead to an increased development of
cancer. Certainly, some people have developed NHL while on anti-TNF
therapy. However, it is very difficult to be sure whether these
cancers would have occurred anyway. The type of patient who is given
anti-TNF therapy (eg, those with the most active and most severe RA)
are just the group who are most likely to develop NHL as a complication
of their disease. In fact, a case could be made for expecting the risk
of NHL to fall with successful anti-TNF treatment. So far, anti-TNF
treatment has not been used for long enough to be sure which way the
pendulum will swing. Certainly, there is no evidence of a massively
increased risk of cancer. However, anti-TNF is not recommended for
people who have previously had cancer – especially in the 10 years
before starting considering starting anti-TNF – because it may increase
the risk of the original cancer coming back or another one developing.
One of the main purposes of the British Society of Rheumatologists
(BSR) Biologics Register – on which the great majority of UK RA
patients treated with anti-TNF are registered – is to establish whether
these drugs are associated with an increased or decreased risk of
cancer. More follow-up of more patients is needed before a definitive
answer can be given.
Rituximab and cancer
Rituximab
is now being used increasingly in the treatment of RA and SLE. It acts
by destroying cells in the immune system which produce
auto-antibodies. It is also used in the treatment of NHL. It is not,
therefore, expected to lead to any increase in the risk of NHL.
Arthritis
certainly does not protect people against developing cancer. Women
with rheumatologic auto-immune conditions should always respond to
invitations to attend for screening for breast cancer and cancer of the
cervix. New symptoms such as unexplained weight loss or enlarged lymph
nodes should be investigated in the same way as in the general
population. Some treatments may increase the risk of certain types of
cancer but this risk has to be weighed against the benefit of
successful treatment of the disease. Whether to take the treatment is a
matter of individual choice for the informed patient.
Gosh, I really understand how difficult a decision this is for you. Can't you increase the MTX to the max first? At least to 20 mg. if you don't want the injection at 25 mg. I'd definitely try that first, with your family history. I'm not on the biologics yet and my RD doesn't want to put me on them, even though I'm still having problems, because he's concerned the benefit won't justify the risk in my case. You have a different set of circumstances, and it's extremely important to ensure you don't sustain damage, but since you haven't exhausted the MTX option, I'd really try to avoid going up the med ladder until you've either gotten a second opinion, or tried the higher MTX dose. Good luck. I know this is a tough one. It seems you're darned if you do and darned if you don't. [QUOTE=Suzanne] [QUOTE=janlee]I
he also said Dr's don't put you on these drugs with such potent side effects just to put their kids tru college. I pray that they don't but that has always been in the back of my mind.
[/QUOTE]
Strikes me as so odd a doctor would just pop up with a comment like that! Do you think other patients have gone and asked such a question in an accusatory way? So he assumes everybody thinks that? I can't think of a reason to say such thing out of the blue (unless you are telling on yourself...okay, I know I'm being bad....)
Good luck, WTB, I know you will find some peace with your decisions soon.
[/QUOTE]
This was not my usual RD I was asking his opinion on my symptoms and what he thought, he may have been sticking up for my Rd. both of these Rd's have a good reputation. I have been requesting my blood work too. so I'm thinking he thought I was questioning them.
Wanttobe,
I can see how this would be a difficult decision for you. When my RD first suggested Enbrel to me, I said no. I didn't think I was bad enough for it. I eventually ended up there anyway. When I told my RD that I was afraid of cancer, he told me that having RA put me at greater risk and that there are some studies coming out that actually show the increase of cancer is the same for people who have RA and are on Enbrel and the people that have RA that are on DMARDs.
One of the symptoms I'd always had, even when I felt like I was in remission during the first year on Plaquenil, was a discomfort in my wrists. It never went away until I started Enbrel. I also have a lot more energy now. I'm glad I started Enbrel as it has made such a huge difference in my life.
I really, really appreciate all the feed back and article to read regarding my decision.
So far it does seem like it has not been common place to just aggressively start the biologic with the MTX as what I'm refering to as a preventative. I think this is where my RD is at and I have read many articles saying that this is the new train of thought with treating RA. That the earlier you introduce the two the better the RA patient is way down the road.
I want to believe that but again- I don't think the darn biologics have been around long enough yet.
Interesting tho- Boney's point about prednisone and inflammation numbers....see I was in remission at 40 now at 9 my levels are just slightly elevated. I'm telling myself hey that's great but what's so great about being on 9? That's still way too much prednisone. My doctor is smarter than me- he probably knows- she's starting to complain of pain at 9 -wait til she's at 5. Already he said I can't drop another 1 mg next week. He said I better let a month go by since my last drop before I try again.
Wanttobe,
You're taking prednisone every day? I didn't realize that. Before I started Enbrel, I suggested to my RD that instead of Enbrel, I take prednisone every day. Prednisone worked really well for me. He said he would only do that as a last resort if nothing else worked. He felt the daily use of prednisone was worse than Enbrel.
My RD doesn't like long term use of pred either. He views it as a necessary evil when other options have been exhausted.Yes I am on prednisone everyday but only because I had such a severe onset that would not respond to medications. I was rendered completely disabled not even able to feed myself for a month. So they jacked my prednisone up to 40 mgs a day and overnight I turned the corner and was a new woman.
Problem is-now I have to be tapered off. Once I hit 10 he said it would be very slow now because 1 mg. sounds like nothing but in ratio to what I'm on it's a big drop. I'm only allowed 1 mg. every 2-4 weeks now. He said I could send myself into a very bad flare if I try to rush things.
I know we've talked about this before, but it amazes me how similar our stories are. When I started the MTX, I started coming off the pred. And then when mtx didn't work alone I started the Enbrel. Enbrel made a HUGE difference. I'm pretty much back to normal. I hate to see you miss out on feeling good again.
hi wanttobe i feel the dfferences here are that.. your rheumatologist would want
to keep you on as low dose pred as possible .. 40mgs is not a low dose.
i have never taken over 20mg daily.. when i was taking dmrds i took 7.5mg and was
given shots in the joints and depomedrol injects for all over relief.. over the 13 yrs
my body has had what i call steroid overload and can no longer have depomedrol injects.
this is a bit of a worry to say the least ... i would say there are a lot of dmrds out there
and can work really well if your not ready for anti tnf try another. first..
Boney
Linncn-
Our stories may just continue to be parallel. I just haven't hit the point when I believe the MTX is not working alone.
As today wore on- I'm sitting around holding heating pads on my wrists and my ankles feel worse than normal. Also all my teeth are killing me again but RD says that's not related.
When all (or some) of my teeth hurt, it's almost always a sign of uncontrolled pain elsewhere in my body. You may be different, but I'm surprised your RD would dismiss it.Yeah- he dismissed that and when I mentioned I was having head aches, brain fog, bad short term memory and dyslexia which I thought he would tell me was the MTX since lots of other people talk about the same thing here- he said we better send you for a MRI. I wish I didn't open my big mouth.
Wow, it seems that you guys in the States are able to get the better drugs so much earlier than us down under!! It took years of having to try out many combinations of drugs before I was eligible for Humira. There are only 11 of us on it in the lower South Island NZ. My Rheumy said it costs ,000 per injection. Before Humira, I was at the stage where I couldn't use a knife and fork if sitting down to eat and getting dresses and undressed was a major event - unbelievable pain
As another poster said, a lot of joint damage can occur whilst awaiting the best of drugs. I'm in this basket and have just come to grips with being mad over not having access to the good drugs earlier.
Wanttobe,
It seemed to me from your original post that you were apprehensive about biologics because of the history of cancer as well as the fact that you thought you had mild RA and you were doing o.k..
I think the reason you are feeling so well "IS" because of the prednisone. I hate to say this, but I'll bet you'll find that once you start reducing the dosage, you'll see that your condition is worse than you think. I say that based on the fact that it took 40 mg prednisone to help you feel better, your severe onset, the fact that you've had two doctors tell you that you need to think about biologics, and because you are still having problems with your wrists and ankles.
About your last post - I've experienced headaches and brain fog from MTX, but never dyslexia. That sounds scary.
I was in about my 11 or 12th year before I started using Humira. Once we had increased my MTX to 25mg my doctor insisted we start considering one of three biologics. Reimicade, Humira or Enbrel. I originally decided on Humira because it was only one injection every two weeks. Remicade seems so serious with the infusion and all. I wasn't ready for that in my own mind. Enbrel was more injections and I wasn't crazy about the injections at all.
I've always considered my RA to be moderate. My xrays show errosions and the MTX alone wasn't controling my pain and my mobility was not what it once was so I finally gave in. It took me 6 months and several cortisone injections in that year to finally admit I needed it. It was a very good decision for me. I was amazed at the difference I felt and I was finally able to think about something else besides pain.
After being on Humira for 2 years my doctor took me off of it due to nurological type symptoms. He was afraid of MS so we stopped it and he sent me to a nurologist. After much testing and treatment for other problems it was determined that Humira wasn't the cause of it so I'm now back on Humira after being off of it for a year.
I'll admit the risk of complications is very scary.....but for me at the time was (and is) worth it. HOWEVER; if you don't feel like you need it now, I don't think I'd do it. RA is a LONG term illness. You've got plenty of time in the future to start something like humira, enbrel or remicade. You've got room to increase your MTX some. If I was you; I'd try increasing that MTX and cutting back on that predisone. Predisone long term is not good for you. I agree that it's likely better to get on a biologic and get off of that predisone. That might be possible with just an increase of MTX. The only way to know is to try.
I wish you luck. This is a hard decision to make. I very much remember struggling with it myself.
Kweenb
I think the point you made about the prednisone making me think I doing better than I really am is true.
That's what it sounded like the doctor was trying to say.
I think I am stubbornly holding on to thinking I somehow beat this thing. Not cured- but bounced back with only minimal complications.
The cancer I'm really worried about is lung because I'm an ex smoker on top of my dad and 3 siblings dying from it.
I think I'm only reading that under Humira not Enbrel.
Does anyone know? The lymphoma I'm OK with. No one has had it and my doctor is so quick to tell me how "treatable" it is.
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