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Adalimumab (Humira)
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05/29/2024 20:21
Jdavidadams20241 
05/29/2024 20:21
Jdavidadams20241 
Adalimumab (Humira)

After reviewing the study "Anti-tumor necrosis factor therapy for early stage Dupuytrens disease" - I decided to try this method myself. I am going to record what I do, and how things go.

I am using brand Yumira in the USA because it is much less expensive. My cost was about 1,500 usd for 6 pens. I know that is still a lot, but it is cheap compared to other brands of Adalimumab.

Step 1 - found an arthritis doctor to prescribe this as it is available in the US for other issues. I am using it for a non approved trial.

Step 2 - nobody wants to inject it so I am doing it myself.

Step 3 - I got iodine swabs, cold spray for pain relief and the syringes included in the study. It is a 1 ml disposable with 1 inch long needle that is 25 gauge. The self injectors do not penetrative the nodules.

May 29th - used 3 syringes. This medicine is meant to be injected in the leg or stomach once every 2 weeks. It help with rheumatoid arthritis and other diseases. I decided that I am going to do the subcutaneous shot each 2 weeks in the hope it will stop the advancement of dupuytren's. I dumped the second syringe in my lap while transferring to the new syringe. $250.00 lesson learned. I used the 3rd syringe to inject 3 nodules in my left hand. The big one got .2 ml and the other 2 got .1 ml. The study used .4 ml in the worst nodule, so I am doing less. I have too many nodules in each hand so hoping less at a more frequent pace will work.

In 2 weeks I will take another subcutaneous and then get bloodwork to ensure I am not hurting anything.

I do not recommend this approach, but I have had so many procedures on my hands and feet that I need something long term.

I had successful surgery on my right index finger that was fully curved.

I had successful surgery on my foot that had a huge plantar fibromatosis nodule.

Surgery's were successful, but I fully expect recurrence.

I have had radiation therapy and several bouts of cryo. All have worked to a degree, but just delaying things. I tried high dose vitamin D, but it did nothing for me.

I am very active and am continuing to do activities that impact my hands and feet. I plan to keep hiking and doing yard work until I can't. The idea of staying stagnant does not appeal to me.

While I have had many nodules and many procedures, nothing has hurt super bad so I am thankful for that. I have talked to others with excruciating pain.

My index finger was almost fully contracted so that affected typing at work. It is back straight.

I also have knuckle pads which I am fixing with steroid injections. Steroids work on my knuckle pads, but not on dupuytren's or lederhosen.

More after next procedure. I am reminded of a lawyer statement that probably applies to me. A person who has himself for a doctor, has a fool for a patient.

05/29/2024 21:46
DanB 
05/29/2024 21:46
DanB 
Re: Adalimumab (Humira)

My hand surgeon said that there were bad side effects reported after the study was posted. He also stated that it was a big guns treatment.

I don't have enough contraction for any treatment at this point.

05/29/2024 22:43
Jdavidadams20241 
05/29/2024 22:43
Jdavidadams20241 
Re: Adalimumab (Humira)

Agreed. The side effects need to be taken seriously. That is where the blood tests and chest xrays come into play. It also opens you up for a greater risk of infection.

Caveat emptor

05/29/2024 22:59
Jdavidadams20241 
05/29/2024 22:59
Jdavidadams20241 
Re: Adalimumab (Humira)

2 things worth noting.

1. You should be somewhat skeptical about opinions from surgeons. I had 2 very good ones work on my hand and my foot. But, their business is surgery so I am not sure they have unbiased opinions about drugs that remove the need for surgery.

2. Adalimumab does have risks / side effects. It is also one of the top selling drugs in the world.

06/08/2024 16:50
Jdavidadams20241 
06/08/2024 16:50
Jdavidadams20241 
Re: Adalimumab (Humira)

2 weeks have gone by and I just injected my next shot in the same 3 areas. The process was faster / simpler this time as I knew what I was doing. The hardest part is getting the needle to penetrate each of the nodules. I did the same doses in each nodule as I indicated in the first shot.

Progression : the biggest nodule has an indention in the middle. I am hoping that the indention was caused by the previous does, but I do not feel comfortable saying for sure. So, I will go with no noticeable improvement so far, but it is very hard to tell. If it is working, then it should be obvious after a few more doses. I have used 4 of my 6 shots. The first time I injected one into my leg, but I decided to bypass that since I am done with 4 of 6 shots.

Reminder : 1 dose in leg, 2 doses in the 3 nodules and one dose squirted on my pants as I did the transfer from the auto injector to a syringe that is easier to use.

That's it for 2 weeks. I am not suggesting anybody else try this, and if you do then I would try to find a doctor to administer the injections. I am doing it myself because I can't find one in the USA.

07/18/2024 21:52
Jdavidadams20241 
07/18/2024 21:52
Jdavidadams20241 
Re: Adalimumab (Humira)

I have missed posting for awhile, but I have not missed the injection.

My first order was six doses in self injector pens. Above displays how I am administering.

I have been injecting 3 areas of my left hand. In the study, they put the full does in one nodule, but since I am self administering, it hurts too much to try that. I use the cryo spray to numb the area, but it wears off fast. After about a third of a dose in each nodule, it hurts enough that I stop. This would be much easier with somebody else doing it, but I discussed that above.

Nodule 1 in top knuckle inner side of hand - this is my worst one as I can't even bend that top knuckle. I had high hoped for this one but so far zero improvement. The skin it tight here so my doses have been smaller.

Nodule 2 - pointer finger lower knuckle inside of hand. This one has reduced some. My last dose caused a blood blister here so I skipped it in dose 5.

Nodule 3 palm left hand - this one seems smaller and does not hurt anymore. It seems like the nodules hurt when touched in the growth phase, but that is inconsistent. Nodule 1 is the worst, and has dexterity impact, but it does not hurt at all.

I am done with my first 6 doses. As discussed above, I wasted 1. I am getting much better at the process.

I have ordered 6 more injectors and will keep doing every 2 weeks.

I have spent 1,700 and am cautiously optimistic. There is no doubt this could have worked way better, but results seem good enough to continue. At least for the second $1,700.

07/19/2024 05:52
wach 

Administrator

07/19/2024 05:52
wach 

Administrator

Re: Adalimumab (Humira)

Your personal experience is quite interesting but doesn't it, at least so far, sound like a lot of money for little improvement? In favourable cases nodules can become stable anyway and without any treatment, not causing much inconvenience. About 80% of patients with signs of Dupuytren's never need any treatment at all https://www.dupuytren-online.info/dupuyt...ontracture.html .

A concern is that you are using a pen to needle your hand and fingers. You might accidentially hit and damage a nerve. I recommend having this done by a hand surgeon, that would be much safer.

Wolfgang

07/19/2024 08:54
Jdavidadams20241 
07/19/2024 08:54
Jdavidadams20241 
Re: Adalimumab (Humira)

I will leave those questions for each individual to decide. I am just reporting my experiences. There is nothing scientific about it. As mentioned, I have already had surgery on a contracted finger. For that reason, I do not fall into the 80% population you are talking about.

09/06/2024 21:18
Jdavidadams20241 
09/06/2024 21:18
Jdavidadams20241 
Re: Adalimumab (Humira)

Lastest update. I have purchased 12 single shot doses and completed 8. As mentioned prior, one shot was wasted going to a higher gauge needle.

I am injecting nodules directly and the process is much more efficient. I can do the injections in under 5 minutes, which includes dismantling the auto dose pen, moving to another needle and injecting 2 to 3 nodules.

I have 5 areas on my left hand. I am injecting into the nodules that hurt / seem to be in the growth phase. 3 of the 5 are dormant and probably reduced in size. I am convinced that at the very minimum, humira is stopping the growth cycle of nodules.

While I am super happy with my results so far, it is hard to say anything definitively. I never understood what started and stopped module growth when leaving them untreated.

The issues mentioned by others about hurting a nerve or getting and infection have not played out for me. I use disposable needles, iodine and lay off using the hand overnight. More soon.

Edited 09/06/2024 21:19

01/16/2025 02:13
Jdavidadams20241 
01/16/2025 02:13
Jdavidadams20241 
Re: Adalimumab (Humira)

I have completed my full set of testing on this and i no longer consider it as a good option in my case. I am not questioning the data of the study that I read, but this did not end up working out very well for me. It seemed like is was helping in my first couple of rounds, but maybe it was just wishful thinking on my part. Sorry if I gave anybody false hope.

I am moving on to my next research paper/ personal trial. It could be another wild goose chase, but i will know in 6 months.

For those just living with this and making the best of things - all due respect. That is probably the safest solution.

For me, I am going into each new possibility with 2 things in mind.

1. I am continuing to try new things until something works, or my hands fall off. I get depressed without the hope of something curing this.

2. Anything I try - I will go in expecting it to work. There are a lot of fake treatments out there, but I try and do enough research to avoid pure scams.

Good luck everybody.

Edited 01/16/2025 02:13

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