Wanting some feedback on the effectiveness of biologics for foot pain. Also, what helps with the pain, swelling and loss of strength/grip in hands.
I work in a hospital laboratory and am concerned with my diminishing strength in my hands. I am having problems with my grip. I constantly drop things and just can’t seem to perform tasks that require dexterity as well as I could in the past. It really has become noticeable to me in the past 3 months.
I’m on week 8 of Leflunomide and it has only helped about 20-30% compared to MTX but I can’t tolerate the SEs of MTX. I’m having a lot of GI pain for the past 2 weeks. Is Leflunomide hard on your tummy? It’s starting to feel like I’ve taken too many doses of NSAIDS but I only I haven’t taken any!
I have a f/u appt 5/12 w rheumy to evaluate the effectiveness of Leflunomide. I just want to be prepared to ask for a biologic that will help with my issues.
I hate taking meds daily and if the meds aren’t really working why take it? I’m giving my rheumy one more opportunity to get my meds right before I look for another rheumy.
TNFs are slow working on the hands and feet. If your hands and feet are bad, I don’t see you dropping a DMARDs, but should be able to lower dose over time. However for some people TNFs work fast, almost no hand pain with Cimzia and been only ten weeks.
After a few months on leflunomide I was having too much trouble with diarrhea. My dose was cut to every other day for around six months and then back up to every day, with no return of GI symptoms. I know that you think the meds aren’t working, but sometimes they are doing enough to continue on them, as they slow the progression of damage. I hope that helps.
I have been on Enbrel for 11 weeks now and the part that has improved the most is my hands. They are about 70% better. No sausages, less swelling and more flexibility. I am industrial mechanic/electrician so that is a big deal for me. The part that is worse are my feet. They do not seem to respond much at all. My rib/sternum used to be my main complaint (before feet) and it is 25% improvement especially with flexibility. The fatigue has lifted but I am much more vigilant on getting more sleep at night when the pain allows it. I try to go to bed an hour earlier than I used to to compansate for night pain wake ups. MTX was not tolerable for me. Hope this helps.
Aberry, I get it. Oh boy … get me started. What it boils down to is getting the best disease control possible to stop the inflammation (which hurts, especially in feet) and to prevent the longer term damage. Inflammation pain will disappear when treatment is effective. Pain from damage, though, is permanent. So the aim is to get the best disease control possible, period.
Have you had imaging done on your feet to see whether some of the pain may be coming from damage? That might be worth asking about. But off the top, I’m guessing that if your feet hurt, your disease isn’t under control. So I’d be asking for whatever will control the disease. There’s not much debate that the most effective agents for PsA control are the biologics.
I had bad inflammation in my feet, along with some damage when I was diagnosed. I played the patient patient for 18 months while my rheum prescribed each of the DMARDs in turn. Nothing helped. Then I asked for a biologic, and she refused, saying my disease was mild. At that point I got scared and went to a specialty clinic. They assessed my disease as severe, and started me on a bio ASAP.
It was many months before the biologic did its magic, and the last fires to be put out were the ones in my feet. (It’s not unusual for the feet to respond slowly, apparently.) By the time my disease was under control, my feet were seriously damaged.
Having foot damage, I’m biased, but I’d be in a hurry to get whatever it takes to control my disease. Many joints can be repaired and replaced, but foot damage is hard to fix. And feet are so important.
At this three+ year stage of my PsA game I've still got worsening foot pain and that worries the hell out of me. I've done the DMARDS and it's a shame I couldn't continue on leflunomide because it did help and I didn't have any stomach issues at 10/20mg alternate days and I'm very GI sensitive - reason for stopping mtx and ssz. I'm now on my second biologic, golimumab (Simponi), it's been 15 months, and my feet hurt more than ever .... but it's a different pain/place to my initial foot pain which was first symptom for me back in 2011. I'm now about to have some more imaging to investigate. I'm with Seenie on foot pain, find out what is going on and throw everything possible at it. Hand pain, mine aren't great but I'm a lot less worried than with my feet, I don't walk on my hands!
My thoughts would be try to find a tolerable workaround with leflunomide even if it's dropping to a low dose alternate days, as Stoney says, and find out your biologic option as an add on asap. It may be you'll need 12+ weeks to get the optimum benefit from leflunomide and it will come good but no harm, none at all, to have a bio ready and waiting in the wings.
Just another thought, I did get exercises from my occupational therapist (physiotherapist) which helped my hands. Definitely worth investigating. I'll have a look at the exercise sheets she gave me and see if I can find any online non-copyright versions I can post or link for you.
Just another thought, I did get exercises from my occupational therapist (physiotherapist) which helped my hands. Definitely worth investigating. I'll have a look at the exercise sheets she gave me and see if I can find any online non-copyright versions I can post or link for you.
Thanks for all the replies and advice. I plan to work on the hand exercises. I really need to work on strengthening and range of motion. I use my hands a lot with my job. However, I’d have to agree that my feet are more important. I was never good at gymnastics so walking on my hands is definitely out!
Sorry for the delayed response. My baby boy graduated from high school today! It was a wonderful, sad but happy day.
Aberry, first off--congrats to your son on his graduation--our baby girl graduated from college yesterday!
I had to message because I can relate. Except, I didn't take any DMARDS, but went straight to a biologic, Enbrel. Enbrel has done so much for my hands--they feel pretty good (compared to how they were before)--the tendonitis is gone and they are much stronger. My feet, however, are another thing....all the neuropathy and soreness over the past several years has finally caught up. Enbrel doesn't seem to be helping them. X-rays recently showed I now have no cartilage between some of the bones. I'm thinking that's what's causing all the pain now because the swelling I had in my feet before I started Enbrel is gone. I literally can't be on my feet or walk much. Yesterday, walking around college campus with our daughter--despite wearing my new comfy old-lady shoes the doctor prescribed--my feet felt horrible. I plan on staying off them as much as possible today. So a walk in the park with my husband on Mother's Day is out of the question.
It'd be best if you could get good treatment, as in biologic, as soon as possible to avoid further damage--especially to your feet. Like you said, they are most important--especially when you have a job like yours where I imagine you stand a lot.
Aberry I too am a lab tech and fear a day I can not do my job. I did find Humira made a difference with my foot pain. I find I still have trouble with my hand pipe ting can be challenging at times. By I did notice improvement after I started biologics I did lower the amount of mtx I was taking as well.
My appt with my rheumy was disappointing today. He examined my feet and said that I have plantar fasciitis in both feet. No change in my meds, come back in 3 months.
I plan to go see a podiatrist for a second opinion. I lay in bed for 2-3 hours in pain from my feet before ambien finally kicks in and I fall asleep.
Aberry, I find having my feet slightly elevated (pillow from behind my knees to ankles with heels hanging over the edge of the pillow to keep them off the mattress) and making sure the bedding is pulled up loose so my feet aren't restricted helps all my foot pain, achilles and plantar. For me seeing a podiatrist early on in my PsA journey was a game changer, orthotics/the right footwear make a huge difference. Stretches and massage (ibuprofen/voltarol gel are good to use) help too.
So frustrating that foot problems are such a big part of PsA. Maybe see what a podiatrist thinks / recommends but keep in mind that if you don't see some improvement with the leflunomide/anything the podiatrist recommends that it's worth getting at least an x-ray to check what is happening/rule out structural problems.
My feet have come full painful circle and I'm off for follow-up x-rays shortly. In the meantime, since late last summer, they have added very sore psoriasis on the soles into the mix. So when talking to the medics I have to differentiate the two+ types of pain. A pain, literally, and I'm sorry you're going through it too.
My husband talked with a podiatrist that is a family friend today and I will see him next Friday. He plans to X-ray my feet and spend time finding the source of my pain. This will be such a relief. I can’t believe that I haven’t thought to go see him before. I have delayeyed making an apt with another doctor while waiting on the appt with my rheumy which was a disappointment as I related earlier.
I feel like a hypochondriac some days when I have so many aches and pains. Which is why I delay going to see my GP. I would love to see a one-stop doc. I need to go back to my GP to follow up on my BP and the swelling in my hands and feet. My rheumy told me Tuesday that its not related to PsA. He hasn’t really talked much about the PsA in the last 2 visits. He just keeps saying that my fibro isn’t under control. I am still not convinced that I have fibro. Even though I am stiff and still having joint pain on the Leflunomide (8weeks), I feel so much better than I did on MTX. I was so exhausted all the time on that stuff, not to mention the constant nausea. I think the SEs from MTX were causing my ‘fibro’ symptoms.
I rarely take anything for pain because it will just be a temporary relief and who wants to live on pain meds. I think he believes that my pain is minimal since I don’t ask for pain meds. He originally gave me tramadol but it causes me to suffer from insomnia and headaches. I already have migraines and need ambien to sleep every night, so no thank you!
I have been off work since Wednesday mid-morning due to conjunctivitis. I’ve noticed that my feet are not swollen at all. Even my hands are less swollen. I though sitting on you duff would cause he swelling to be worse and that moving around would help it. My swelling seems to be worse the more I’m up.
Lastly, I looked up plantar fasciitis online and I do have some of the symptoms but the ball of my feet is what hurts so very bad. The heel & arch not so much.
Excuse my rambling, I gues I just need to vent. My hubby & kids just don’t understand. I pretty much am the one that tends to and takes care of everything so they are accustomed to me having the solutions and not needing help.
I'm late to the party, but I'd also add that the biologics are EXCELLENT for my hands and feet. I've been on three so far: Humira, Enbrel, and Remicade. All of them have done wonders for the inflammation in my tender hands and tootsies. I don't know where I'd be without them. If I'm late with my dosing, which sometimes happens with my insurance fighting tooth and nail to not pay for anything, I really notice the increased symptoms in my extremities. Swelling, reduced range of motion, redness, pain are all really difficult to cope with without the bios.
I hope you get some relief soon, aberry. In the interim, warm Epsom salts baths, and therapeutic warm paraffin dips can really help with pain and stiffness. Since they aren't prescription and not more meds, they don't usually interfere with your other trestments.
I went to see a podiatrist today. He examined my feet and asked about all the swelling in my hands & feet. I told him that my hands and feet are swollen every day. I wake up swollen.
He diagnosed the pain in the balls of both feet as a neuroma. He injected cortisone in both feet. I do not have plantar fasciitis. He was really concerned with all the inflammation and tenderness that I am experiencing.
I plan to put in a request with my GP to refer me to another rheumy. The foot doc feels that I need more aggressive treatment.
You're on a roll now, aberry, and I think that you need to keep it going. I'm impressed with your podiatrist, and I think that getting a referral to another rheumatologist is a very, very good idea. I'm not unbiased: I'm someone who has sustained severe and permanent damage because I trusted a very conservative rheumatologist for too long. I really worry when someone has foot involvement, and it sounds, from what your podiatrist is saying, as if you do.
I regret not having been more militant when my rheumatologist said that she thought my disease was too mild for a biologic. I regret it every day, and it has made me into an evangelist for aggressive treatment. I think the time has come for you to do whatever it takes to look after yourself. You go, girl!
