Does anyone else have sharp transient eye pain?
Posted , 5 users are following.
I see we all suffer from the very debilitating pain associated with scleritis. I don't think the medical community is aware how severe the pain is; I always feel dismissed when I mention it. I want to shout "I can withstand a lot of pain but to endure this pain is unreasonable." In addition to the constant pain from inflammation, I have sharp pain behind my eye that is severe and fleeting. I also have what I describe as little bursts of pain behind my eye, like little explosions. Sometimes I feel as if a knife is going through my eye over and over. As quickly as they come, they go. My doctor at Duke says the pain that comes and goes is not from the scleritis and I should consult my primary care doctor. It doesn't seem possible as severe as it is that it is not from the scleritis. Does anyone else experience this kind of pain?
0 likes, 9 replies
shauna65365 Pamela_Elle
Posted
I am so sorry your Doctors do not take your pain seriously. What medication do they have you on?
Right now I am taking Methotrexate and Weekly Humira shots. After starting weekly Humira shots I am completely pain free. My eyes are still red but not as severe. I am not in remission but being pain free is amazing. If you are not taking Humira start talking to your doctor about it. It took me over a month to get my insurance to approve it. They also have a savings card you can apply for so that your co pay will not be over 5 dollars.
Smiles
Shauna
Pamela_Elle shauna65365
Posted
Hi Shauna,
Thanks so much for responding. It is such a relief to get feedback from patients who can identify with how you feel
I am on methotrexate and weekly Humira but I take an additional 3200mg of advil a day to try and cut the pain. Although the pain is still there, it is not as bad. I had been on Humira for four months and I think part of the pain was headaches (in addition to the pain associated with scleritis) from the Humira. I went off Humira and immediately, the next day, I was a different person--better. My doctor says it is because the Humira finally kicked in but I didn't believe her. Slowly, I am beginning to think she was right but I am afraid to go back on it because I have no quality of life. I am wondering if once your body adapts to the Humira do these side effects go away? How long before Humira started working for you? How much methotrexate do you take? I take 15 mg.
Thanks again, I am happy for you that you are pain free!
pamela
shauna65365 Pamela_Elle
Posted
Hi Pamela,
So funny enough the Methotrexate is what makes me feel so so sick. The Humira makes me feel better. I think that's why treating our eye disease is so difficult because we all react to everything differently.
I am now taking .6ml Methotrexate injection. The pills tore up my stomach. I am slowly weaning off of it though because of how terrible it makes me feel.
I am so sorry you are still in that much pain. If Methotrexate does not make you feel sick you may want to talk to your doctor about upping your dose? It takes 3 to 4 weeks to see the effects from the Meth. But well worth it if you can tolerate it. That way you may be able to stop taking Humira without having any side effects.
I think if your Rheumatologist and eye doctor do not take your eye pain seriously then it may be time for you to find a different doctor. Good luck and keep us posted. I hope you become pain free very shortly.
Smiles
Shauna
Pamela_Elle shauna65365
Posted
Hi Shauna,
Did you not ever have any side effects from the Humira?
The eye specialist at Duke University (he is 4 hours from my home) would like me to go up to 25mg on the metho. Unfortunately, The rheumatologist is the only game in town and they are well aware of it. I consider them only a signature on a prescription pad because they are so overwhelmed they can't possibly help anyone. Appointments are 6 months out and if I had another choice I would go to a different doctor.
Thanks again for your help Shauna, you are kind!
shauna65365 Pamela_Elle
Posted
I did have one really weird side effect from Humira. I lost my voice for 4 hours the 2nd shot I gave myself. I looked it up and that happens to 20% of people who take it. It only happens on the second shot and it was just really weird. I talked to my Dr. About it but other than that and the fact its the most painful injection ever. No I have not had any terrible side effects. But people who can tolerate Methotrexate should stay on that because its considered the gold standard drug. If your specialist wants you to up it for sure you should!
I am really upset you have been treated this way. and your Rheumatologist should see you Monthly until you are pain free. Just inexcusable!!
Pamela_Elle shauna65365
Posted
Thank you for your kindness Shauna. The problem is my eye specialist, although I do have one in town as well, is so far away. I need a rheumatologist to monitor the drugs. I have been told they are the only ones who will monitor the drugs. I think the specialist at Duke could do it but he wants someone who can do more frequent blood work on me. I haven't had a face to face appt with my RA doctor since May. She is booked. I did talk to the Office Manager and got some action and the doctor and I have been communicating by the portal. But truly I still believe they are simply an electronic signature for me in many others. I guess in the Rheumatology world, scleritis is rare and what I find is they pass a lot of things on to my primary care doctor. I will be seeing her at the end of the month--endless. One more learning lesson and at the very least the prednisone has compelled me to join the YWCA so that is a good thing :-)
Pamela_Elle shauna65365
Posted
I remembered when taking Humira the shot was less painful if I took out of the fridge an hour before I gave myself the shot. This allowed it to get to room temperature and it did help.
Hope this helps!
Best, pamela
CurlyKarey Pamela_Elle
Posted
Hi Pamela-
I have had scleritis for 8 years now and have also experienced the stabbing sharp pain you wrote about. I call it the "ice pick headache" It feels like I am being stabbed in the temple over and over with an ice pick. Not fun!! After years of trial and error I have my flare ups under control for the most part. I am on 7mg of prednisone daily, 20ml of methotrexate weekly and 40ml of Humira bi-weekly. This "cocktail" has worked well for me for 4 or 5 years now. I honestly forget how long I've been on all three. The years seem to all flow together. As Shauna mentioned every indiviual is different with scleritis, there is no one "cure all", which is really upsetting. I feel like a science experiment. I absolutely agree with Shauna, you are your own best advocate, you need to try to find a different Rheumatologist. One that you will be able to see more often. Even if you have to drive an hour or two, it will be worth it. This has been a long, tiring, emotional journey for me. When I was first diagnosed I had no idea I would be dealing with it 8 years later. You need to have a doctor who will be there for you emotionally as well. The psychological affect of being on such strong medication and being unable to control the situation has been very difficult for me. My doctor has been there through every tear, every anger filled conversation and has tried to answer every "what if " question I have thrown his way. Please try to find a doctor who will be there for you. It will make your journey a little easier. Good luck and best wishes.
Jole Pamela_Elle
Posted
Hi, I know that horrible pain all too well the stingling, throbing, and stabbing can be overwhelming. I've had posterior scleritis for almost 10 years, started when I was 23. I only have pain during flairs, if i dont get it under control i get fluid in the layers of my eye that pryes it apart. I have lost a lot of my sight in the left eye. I raise my prednisone from 7mg to 35 or 40mg to get it back under control. Then slowly, very slowly taper down. I get extremely sick when tapering, and if I go to fast it flairs back up. But the immunosuppressives I've tried (methotrexate and cellcept) made me a lot sicker..... I'm sorry to hear about your docs, like others have said, you deserve better. And remember your not alone! Good luck with everything.