Nucala and extreme back pain and muscle tightness

[crafty12]

I had my first dose November 2021 and started noticing back pain around Christmas. Began severe back pain after my 3rd injection in January 2022. Also had an injection in February and March. I will not be taking any more. I really feel this is where this is coming from. I have had no injury. This has been a very dark time in my life. Have been going to physical therapy and on pain meds and muscle relaxers. Takes 4 months to get out of my system. Anyone else have this experience? Thanks in advance.

[Dairyman11]

I got a disabled parking permit because my back pain was so bad. No issues before Nucala, but it seems I had an undiagnosed lower back injury that was clear on the X ray. After around 12 months, the back pain is mostly gone, so I am really not sure that is going on.

[crafty12 in reply to Dairyman11]

How long did it take for Nucala to get out of your system? I do have a bulging disc but my physical therapist says my pain is not related to the bulging disc. She said if it was my bulging disc then I would not be able to do some of the exercises they make me do. I have looked on several other sites like Askapatient and have seen extreme muscle pain after Nucala. I want it out of my body! Six weeks down. How many more to go. Meanwhile, my asthma is good. There has to be another way. I can't live like this.

[Dairyman11 in reply to crafty12]

I am still taking Nucala. Basically I would die without it due to the effects of continued high steroid use, so I have no choice but to live with any side effects. My back issues are very confusing.

[crafty12 in reply to Dairyman11]

I'm sorry you HAVE to take Nucala.

[hoven]

I was taking Nucala but have stopped as have severe muscle pain in my legs. was hoping it would ease but is getting worse. don't know where to turn. anybody know how long it stays in your system?

[crafty12 in reply to hoven]

I have stopped Nucala (March 2021) and have turned to an orthopedic doctor and physical therapy. I am sleeping in a chair at night. My pain is in the morning. Once I get moving, I'm okay. When I sleep upright in a chair, I can get up easily in the morning. My physical therapist does dry needling on my leg. I think it helps somewhat but I still hurt. While my pain has got a little better, it is still bad. I know how to nurse the pain now. What I would give to be able to move like I used too. Going back to orthopedic on Thursday. Will probably be getting epidural #2. Most of my pain is in my left calf on the lateral muscle. I have cursed more in the last 4 months than I have my entire life. I hope you all get better. This pain is no joke.

[crafty12 in reply to hoven]

How long did you take Nucala? I only had 4 injections. If you read online it says it takes 4 months to get out of your system but my doctor says it's more like 2 to 4 months depending on the person. Since this biologic is administered monthly, it should taper off more quickly than say a biologic that is administered every two months as other biologics.

[hoven]

had the first injection in May 21 noticed weakness in my legs straight away and back pain . they insisted it was because of occasional steroids I had taken . stopped it three months later and the pain went away. asthma got bad again so took it again but was a lot worse for some reason and a month ago I had had enough. no sign of it easing. If you have been off it for longer surely it should be easing off now. been discharged from the special airways clinic because of that and now don't know where to go for asthma support. Ihave also sworn a lot lately!

[crafty12 in reply to hoven]

I don't think these doctors really know. Everybody has a different reaction. Some are great and some are like ours-not great. I was talking with my nucala dr yesterday on a televisit. She said she had not heard of this before with her nucala patients. I asked her how many she had I said 20 or 30? She said a handful. So that's 5? I would not call that a good sampling. She doesn't believe that's the case but totally gets that I want to take a break and see what happens. We shall see.

[crafty12 in reply to hoven]

I meant I stopped Nucala March 2022 not March 2021.

[hoven]

no I don't think they k now. when I asked my consultant about side effects he said 'there aren 't any!' but I must say it is reassuring to know that there are others with the same experience. I want nothing to do with the pharmaceutical industry! but of course sadly will have to with asthma.

[d2read]

I'm curious to all of you who have been told you HAVE to take Nucala (mepolizumab) for your asthma precisely why your physicians have said so. What specific diagnosis have they given, making Nucala the only biologic that will address your asthma?

And the one who said there are no side effects needs to return to medical school -- he's flat-out wrong. Wrong enough that I would do a little research, print out a list of the know ones, take them in to your next appointment and ask for an explanation of why he cavalierly dismissed providing you with complete information so you could make an informed decision about your health care. In the US, that would be reason enough to find a new physician -- it also would be worth a complaint against him to the medical board and his employer.

I was one who was on Nucala for just a few months, then developed corneal ulcers caused by the same virus that causes shingles. It took 6 months to get it out of my system, during which time my asthma worsened precipitously, but then I began using Fasenra (benralizumab), and with the first injection I went into complete remission of my HES. I have hypereosinophilic syndrome - HES -- which exacerbated my serious life-long asthma and caused innumerable other problems. I also reached the point of steroid toxicity a number of years ago, so it is used literally only when an asthma attack is quite serious and potentially life-threatening.

The Fasenra didn't immediately alleviate all my asthma (I also take Xolair to help with severe allergies and their trigger roles), but this past fall/winter/spring is the first one in my life I haven't had at least one major asthma attack.

No drug is without side effects -- but it's a cost-benefit analysis. In my case, I was dying, fairly rapidly, of the combined effects of the very high HES (when the eosinophils attack your own body instead of foreign invaders, destroying organs/tissues/systems, and planting the equivalent of improvised explosive devices hidden throughout your body. My two biologics are slowly giving me back my life.

I will never be cured. But I no longer wake (if I'd managed to sleep at all), in great pain, wondering how much longer I had to endure being constantly stripped of all the things that had made life worth living. After a decade of being unable to work, I'm considering part-time jobs I can fit around my medical life. I have been able to take up new hobbies and discovered some talents I didn't know I had, and found joy in exploring them.

Is life perfect? No. Are there still problems the drugs don't address? Far too many to list -- most caused before I went into remission for the HES and only now being discovered.

I've found that while I despise the pricing and games pharmaceutical companies play in the US, the history of testing abuses and criminal conduct in developing countries, the researchers I've met have been incredibly dedicated, the product managers determined to find solutions for patients like me, with rare diseases that many would simply ignore.

So I'm grateful to them for all the good they have brought to my life, and the efforts they are still making to rethink how they treat diseases like asthma. And I do everything I can to make sure that I help as I can -- volunteering for studies and research programs, being a patient-advocate, and pleading for those who cannot afford the costs of testing, treatment and medical management here in the US and in other parts of the world without national health care.

Please don't give up on all biologics because Nucala hasn't worked for you. Ask about trying one of the others, if you qualify. Educate yourself about your underlying conditions, and ask your doctor and other healthcare providers (nurses, social workers etc.) for more info and to explain parts to you.

And be sure to have the side effects you believe to be tied to Nucala reported to your country's Government Drug regulators -- they all maintain records on reported side effects and investigate them. If your doctor won't report the side effects, describe them in as accurate a manner as possible, with as much supporting documentation as you can get and submit that.

Good luck! Debbie

[hoven]

Hi, I recently stopped Nucala because of side effects. gathered that it could take up to four months for it to leave the system. today it has been 3 month and I can feel some easing thank goodness. thought I would put it out there as some have been mentioning it. Now I will have to try Fasenra as that is all that is left to me. I am bit scared of the side effects of that one but feel I have no choice . I can't go through all that pain and discomfort again.

[d2read in reply to hoven]

Good luck with the Fasenra -- for me, I've literally felt a tiny bit better every single day since the first injection 4 years ago this week. And rediscovering life without eos, despite all the damage already done, has been miraculous. I'm hoping you are as lucky as I've been. Let me know how it goes.

[hoven in reply to d2read]

Thanks Debbie. I have had to take Prednisalone which makes me feel ill when I finish the course, while waiting on the list for Fasenra. so pleased you are feeling better.

[SJL2]

Hello crafty12,

Sorry that you were experiencing those side effects. I too had my first Nucala injection, Nov, 2021. Have also been experiencing fatigue, headaches, body aches, sometimes almost crippling lower back pain. That said, the most psychologically bothersome is noticeable hair loss after about the 4th to 5th injection! I've posted about this today, somewhere in this site, asking if anyone else has experienced hair loss after being on Nucala.

Good luck with your future treatment.

[Subicbay]

My experience with Dupixent

For many years, I have been suffering from chronic sinus infection, eczema and asthma due to environmental allergies. I have been on Dupixent for over 2 years. Dupixent got rid of nasal polyps and my asthma was under control. But for the past 6-8 months, I have experienced severe headache, blurry vision and joint pain. One of the many side effects of Dupixent is Blepharitis, headache and joint pain. My rheumatologist told me to stop Dupixent until farther notice just to see if my condition improve. It did. My headache had calm down. I'm on ocusoft for Blepharitis and Xiidra for dry eyes which i believed are side effects of Dupixent. My allergist is switching my med from Dupixent to Nucala. My concern is Nucala may have the same side effects as Dupixent. I'm undecided whether to take Nucala my concern is the side effects that I had experienced with Dupixent.

crafty12 thank you for sharing your experience. Based on your experience, I will not be using Nucala. I have enough joint and back pain.

Does anyone have similar side effects either Nucala or Dupixent? Thanks!

[teppanyaki]

I had 5 months (5 shots) of Nucala: intense lower abdominal pain and chest and back pain -- along with urinary tract infection and itching torso and scalp. I stopped 3 months ago. Abdominal pain has gone. Chest and back still bad but breathing is still OK. Really don't know what to do once nucala is totally out of my system. It's hard to live and function with constant pain.